Made with Awesome

New Psychiatrist

2011-10-06T12:00:00.002-05:00

I decided that I needed a plan to stay out of the hospital. My idea was that this would give me more of a sense of safety in general and particularly in regard to wanting to come off medications as much as I can. I didn't want one of those plans where I write a list of things that will help me cope through various states of distress, but ultimately still leaves the hospital as a last resort. The hospital needed to net even be a last resort. Current-psychiatrist is very quick to shout, "hospital!" so I needed a plan that would circumvent that.

Not knowing any psychiatrist who I could be honest with in a plan like this, I came up with a sneaky plan: when hospital becomes an imminent possibility, I would go into hiding (so that my psychiatrist could not find me to send the police for a "wellness check" or anything), I would act as my own psychiatrist in regard to handling medication changes, and I would buy any necessary medication on the black market. This is not a particularly safe or legal plan, but it is still a lot safer than using the hospital as my back up plan, in the way I understand and experience safety.

Therapist (previously known as "new-therapist") gave me a recommendation for a new psychiatrist instead. She said he is less quick to hospitalize his patients and he is more willing to acknowledge that the hospital cannot help some people and he is more willing to look for actual alternatives. Therapist says he is the best psychiatrist she knows, that she recommends him to almost everyone she knows, even her own family. Dietitian works in the same office as this psychiatrist and gives him similarly high praise.

I went to see this new psychiatrist last week. It went well. It was mostly just me giving him the history of my crazy (which is much easier when I am not in crisis, which is when I am usually giving this history). He reacted to me like a real person, took it at face value when I said that the hospital usually leaves me worse off, joked with me. When I mentioned my no-hospital plan, he mentioned camping in an Ohio forest as a hospital alternative. While I'm not sure that is the particular solution that would work for me in crisis, I am glad for him to have mentioned it because it showed that he took my no-hospital plan seriously and is willing to work with that. After talking to him, Therapist said he enjoyed me, said that I am the sort of person he likes to work with, characterized me as sardonic.

It is weird now to have a whole team (Therapist, Dietitian, Psychiatrist) of mental health care professionals who actually like me and like working with me. I've met so many who have had an antagonistic attitude toward me. So many have blamed me for the failures of their treatment, lied to me, ignored things I've said, not taken me seriously, assumed random things about me, attributed random (usually negative) motives to me rather than asking me, etc.

Having met so many professionals like that destroyed me in a lot of ways. For a while, it destroyed my sense of what was true about the world. When they contradicted my observations of reality, I assumed they were right, I was wrong, and that I was crazier than I was. It destroyed my sense of myself. When they called me manipulative and I couldn't see that in myself even with deep, honest introspection, I concluded that they were still probably right because the manipulative person herself is probably wouldn't recognize that in herself. They destroyed my sense of how I relate to others. Up until then, I had thought I was a generally likeable person. There had been so few people I had ever not gotten along with decently well. Then there was this huge group of people who seemed to loathe me. I was the common denominator, right? So I was more tentative about my belief that I am generally likeable and easy to get along with.

Now I know that my perceptions of reality are fine and always were. Now I know that I am not manipulative and never was. Now I'm learning that I'm generally likable. I'm still tentative about that last one. I still don't know why so many professionals dislike me so much. I've got a lot of hypotheses (I challenge their power, I don't get better the way they expect, they feel threatened by my intelligence, I recognize their lies and lack of respect for patients, etc.). It could be different for every professional who has disliked me, a different combination of little bits of different things, some of which could be among my hypotheses. (It has always seemed to me that there should be one big, over-arching explanation, since this dislike has been so consistent, but there might not be.)

My new psychiatrist like me, respects me, and is willing to work with me on my, not unreasonable, terms. That is a great thing. It is a weird thing. It is a sad thing that this is a weird thing to me.

Do my friends not believe me?

2011-08-23T15:53:00.002-05:00

Update (8.24.2011): In the particular situation I was thinking of when I wrote this, I think my friends knew less of how mistreated I've been than I realized, which puts things in a better, less hurtful, perspective. Still, there are other situations that come up where this is not the case, so the post still stands as a thing that happens.

When mental health care comes up in conversation with my friends, or anyone really, I can't help but pounce on it. They hurt me so much and they continue to hurt so many people. It is outraging and heart-breaking. I'm bitter, but I'm not only bitter because my anger is entirely legitimate; I was mistreated and abused. When it comes up in conversation, sometimes I get teased for being bitter and so quick to pounce, which is fair even though it stings. But sometimes my friends seem to try to excuse the mental health care professionals. That hurts a lot. Sometimes they come up with some of the same excuses for the professionals that I have thought of to explain their atrocious treatment of patients, but they seem to let these excuses prevail and actually absolve the professionals of guilt instead of using it as a reason a well-intentioned person might slip into abusing patients.

I get that professionals have to be guarded because a lot of patients are manipulative, but that isn't a good reason for them to assume I am manipulative. I get that in a hospital-setting not everything can be arranged to perfectly suit each patient, but that isn't a good reason to blame me for not trying hard enough when affirmations don't work for me. I get that not all patients notice the logical inconsistency and factual inaccuracy of the platitudes and "life lessons", but that doesn't make it okay to lie to me or any other patient. I get that mental health care is a field prone to compassion fatigue, but that doesn't excuse taking it out on me. I'm really not asking a lot of the professionals: please treat me with respect, please don't lie to me, please engage with me, please don't abuse me. I am asking much less of them than they explicitly tell me they will do for me.

I don't understand why my friends fight me on this. Do they not believe me when I say I was treated poorly? Are they trying to dissuade me from acting like a conspiracy theorist? Do they think it isn't that bad? I don't know; I just know it hurts. It feels like they are telling me that it was okay for these people to treat me like this. It scares me because, more than anyone else, it should be my closest friends who I am able to persuade that mental health care needs to change. I might ask them why they fight me on this, but I'm also afraid that, by bringing this up again, I will just cement their position that I am wrong or misperceived things or whatever they think.

I'm tentatively back from hiatus. Life is okay; I have good days, mostly on account of The Boy, but I'm still mostly on the depressed end of the scale. It's milder and more manageable, I am eating and I don't think so much about suicide, but it still sucks.

Hiatus

2010-11-19T10:56:00.001-06:00

I'm going on hiatus. Mental health care issues rile me up and I'm trying to get to a point where they don't rile me up so much. It is really upsetting and no more helpful for my mental health than that mental health care itself. To do that, I'm going cold turkey on actively pursuing these things. Maybe for a short while, maybe for a long while, I don't know yet. Maybe if I don't actively pursue topics on the wretchedness of mental health care, those same topics will pursue me less. I'm going to close this blog to further comments, too, so that I don't have comments on old posts to rile me up. So I'm not going to be reading about mental health or mental health care during this time. I still love you and I'll still see some of you 'round on facebook, but not in the madosphere.

Subcultural Differences

2010-11-04T14:41:00.003-05:00

When I wrote my thesis, there were a lot of things that didn't make it in for various reasons. One of those things was addressing subcultural differences between patients and mental health care professionals. One of the reasons this didn't make it in my thesis was that I didn't figure out a good way to research this (I wasn't sure how to get at this without getting things like emo, goth, etc; or religion and ethnicity).

What I was after in describing subcultural differences wasn't things like emo, goth, punk, straightedge types of subcultures, but smaller. Differences like the unique cultures within families, groups of friends, schools, etc. There are things that are perfectly normal within those subcultures that look weird, perhaps even crazy, to outsiders; but these things are pretty innocuous and totally acceptable on the inside.

In my social circles, most people are probably of above-average intelligence. We use words that others consider "big" and we are willing to ask if we don't know what a word means. We make puns, we tease grammar mistakes, and we acknowledge what we do not know. This is the world I live in. In my social circles, no one ever considers that I have Asperger's because when I get confused by ambiguous grammar.

In mental health care, these things that are normal in my social circles is misunderstood and cause for them to suggest I have Asperger's:

When I use words they don't understand, they don't ask for clarification or definition. They seem to assume that whatever partial understanding they get is correct and then also assume that I use these big words to distance myself from people.
When I giggle after my doctor says, "we'll have to keep an eye on that," in response to my concern about a blurry vision drug side effect, the professionals look at me funny, just because they haven't noticed the pun.
When I object to the staff telling me, "today will be a better day than yesterday," while telling me that I can't know that today will be worse, they act like I'm just making trouble. They react to it like I am just doing something to annoy them and express my displeasure, not like I am reasonably criticizing the content of their treatment. Even when I explain that they can't know that today will be better anymore than I can know that today will be worse, they still don't understand me; they don't understand that they are wrong even according to their own rules.
When we took yarn to make a circle of how big we thought our waists are, our ideal waist size, and our actual waist size, there were exclamations about the yarn stretching when we measured our actual waists. The staff said that yarn does not stretch even after I, having spun my own yarn, explained that it does stretch, as a property of its creation.
After reading an article that very carefully defined and contrasted "self-worth" and "self-esteem", an art therapist told me to describe my current self-worth and what my self-worth would be if I was non-eating-disordered. However the article had defined "self-worth" as being immutable, everyone's value being infinite and unchanged by anything they did; while "self-esteem" was defined as one's appraisal of his or her value, which usually does not match their actual value, which is "self-worth". So asking me to describe my "self-worth" with and without the eating disorder made no sense. According to the article, my self-worth would be the same either way, and every person's self-worth is the same as everyone else's. I suspected this was not really what she wanted me to describe, and that I was really supposed to describe my self-esteem, but when I asked, I was accused of being needlessly pedantic. I really didn't know which to do though, since it seemed plausible that she would want us describing our self-worth to make the point that it shouldn't change between having an eating disorder and not having one. She wouldn't help me understand, so I made four lists, self-worth and self-esteem with and without an eating disorder.

In these situations, I'm right. I'm in touch with reality, I am not having any strange thoughts, I'm not pointlessly obstinate, I'm not doing anything wrong or against any rules, I am not expressing any symptoms. But I'm branded as resistant to treatment, as having Borderline Personality Disorder; they tell me I am wrong about physical facts of the world, they chide me for not wanting to get better. If their subculture was similar to mine, they would understand me better. They would understand the words I use or be willing to ask me to clarify, they would understand when I point out that they contradict themselves, they would admit that I know more about yarn than they do. If they were willing to allow for subcultural differences without knowing mine, they might ask how I know that yarn stretches or why I object to their statement that "today will be better." That is harder than asking me for my religion and ethnicity to determine subculture, but it is equally important. Mental health care is one of the places where I find it most important to be understood correctly, because the stakes are so high, and one of the places I am least understood.

(Situations like this make me wonder how most people manage to communicate. Mental health care professionals are not careful to say what they mean, even when asked for clarification, nor are they careful to listen to what I actually say. But most people don't seem to have nearly as much trouble communicating with them as I do. Are people on both ends making the same assumptions, ending with no confusion due to more or fewer assumptions? Are most people equally sloppy with grammar, that they are all making identical mistakes, therefore understanding correctly? When grammar is ambiguous, how do these people automatically assume the correct meaning?)

The victim is not the problem

2010-10-29T11:06:00.000-05:00

Mental health care treatment focuses on changing the person who is suffering from mental distress. Even if the cause of the distress is abuse or racism or bullying.

On one hand, I understand this. There is no reason for the victim to have to live a miserable life just because his/her (token motion toward gender neutrality, henceforth ignored for the sake of not being awkward) abuser refuses to change. If it improves her life to avoid her abuser, to move away, to ignore what her abuser says, there is no reason for her not to do those things. I want her life to improve in any way possible.

But on the other hand, I can't help getting stuck. Changing the way the victim does things, telling her she is the one who must change, seems to tacitly accept what her abuser did. I know, I know; this is not necessarily the case, this is not always the case, but it sometimes is the case and it is something mental health care has a long history of being guilty for doing. A hundred years ago when men didn't want to deal with their wives, they sent them to the mental institution where the problem became the wife, instead of the husband. Political dissidents in the Soviet Union were locked in mental institutions to discredit their criticism of the government and imply that they, not the government, are the problem. When racism or sexism or homophobia is the problem, the mental health care professionals tell the victims they must change, often ignoring the greater problem. Strictly speaking, these victims are not ill, do not suffer from a mental illness, but are reacting in an entirely reasonable way to oppression or abuse. Putting them in mental health care implies that they are the problem and lets the abusers and oppressors off the hook.

I'm having a hard time with this. I don't want to be made miserable by the mental health care professionals who acted abusively toward me, it would be like letting them continue to abuse me. But I really really don't want to let them off the hook either. They are hurting so many people and it makes me sob when I think about it too much. I feel like I have to stop this oppression before I can do some kind of "change myself" thing to make myself feel better about it. But I'm pretty sure that will never happen. I have no ideas on how to solve this.

Assertiveness Formula

2010-09-01T15:56:00.000-05:00

Practice in using the following assertiveness technique, taught in hospitals: "I feel... when you... because... please..."

I feel frustrated and angry (but I used to feel confused) when you give me contradictory rules because I cannot simultaneously follow contradictory rules, putting me in a no-win situation. Please don't give me contradictory rules and please listen to me when I question them.

I feel frustrated and angry (but I used to feel defeatist and confused) when you react defensively to my attempts at assertiveness because it was you who implored me to try being assertive and told me people would respond in kind. Please make my attempts at assertiveness with you a positive experience so that I am encouraged to be assertive elsewhere.

I feel attacked when you question my vegetarianism because it implies that you think I am lying. Please be upfront with me about the tricky situation you are in regarding the intersection between vegetarianism and eating disorders.

I feel frustrated when you nitpick about word choice (labeling feelings good or bad, using absolutes, etc.) because I have to rephrase my sentence to satisfy your requirements. I feel frustrated when you call me "pedantic" when I phrase my sentences in ways that unequivocally meet your requirements because that puts me in a no-win situation (either my words are wrong or I am a pedant). Please be consistent; don't nitpick about word choice at all or accept the consequences of nitpicking.

I feel angry when you don't take responsibility for your mistakes when I have taken responsibility for my mistakes because it makes me seem a scapegoat for the problem, being the only one to have admitted to making a mistake. Please take responsibility for your mistakes and please apologize for them.

I feel alienated and hopeless when you make generalizations about people with eating disorders that don't apply to me because it invalidates my own experience and implies that you don't understand people who don't fit that mold. Please don't make those generalizations or, at least, please phrase them without such exclusive language.

I feel sad, frustrated, powerless, and unimportant when you don't actively consider what I have to say because I can't change my situation any other way and if I were important, you would listen to me. Please listen to me and actively consider what I have to say, being open to that changing something.

I feel unimportant when you ask if I think I am a typical patient after I suggest ways to improve patient care. I feel this way because I hear the message that if I am an atypical patient, it is not worth considering my suggestions, as it helps only one patient. Please recognize that I am a patient, just as important as any other; please recognize that I may be atypical in my ability to verbalize these problems and suggest solutions, but I am typical in my being hurt by these problems; please recognize that I haven't suggested anything that wouldn't improve patient care generally, even if it is in areas that other patients are unable to identify.

I feel relieved and surprised when you apologize to me, respect me, or make a change in response to me because my experiences in mental health care have led me to expect the opposite. Thank you. Please continue.

I feel sad and angry when you foster an environment that leads me to distrust mental health care professionals and expect to be disrespected because that is not an environment conducive to improving mental health. Please do better.

Betrayal

2010-08-19T14:15:00.000-05:00

I feel betrayed. I was an active member of the Patient and Family Advisory Council of the local psych hospital since the council's inception. I have been away from it for the last six months because they require that patient members not have been a patient there for the last six months. According to that rule, I can return in September, but I think I might hold off until I am feeling the betrayal less acutely.

The hospital staff who were also members of the council were outwardly very polite and respectful toward me. They didn't treat me like a patient, that is, they did not treat me like a fragile china doll, insult my intelligence, or make unwarranted assumptions about me. Still, after a few meetings (once a month), I began to feel uneasy about them. When I made criticisms, they often agreed with my assessments, which I took cautiously as a good sign. Cautious because I doubt any therapist would say that invalidation is good therapy, even if the therapist in question routinely invalidates patients, but a good therapist would answer similarly.

When I mentioned specific situations that happened to me at their hospital, they were sometimes dismissed. The organizer of the council would often note that the self-injury program I had been in wasn't really part of their hospital, but rented space and had their own rules and ways of doing things. Any criticism pertaining to my experience of being in their eating disorders program as a for-really-real vegetarian (meaning my vegetarianism was not related to my eating disorder) was dismissed because vegetarianism was "allowed" now (explanation below). Sometimes, for criticisms they couldn't dismiss so conveniently, they apologized, but implied that the situations were aberrations and they never knew of those things going on. I had no defense in the face of these excuses because I hadn't been a patient in their hospital for several years and couldn't know that things were still the same. But I suspected things were not so different as they implied. These excuses and dismissals became more frequent over time. Perhaps they tired of me, perhaps I was getting bolder in my criticism and they were feeling more defensive than before, I don't know.

When I was in the partial hospital program in February, my suspicions were confirmed. All the tendril-squishing stories I've written are the sorts of criticisms I made before, but didn't know for sure would still apply. Vegetarianism was allowed this time, which the director of the unit knew, but the dietitian didn't know and I was still held in suspicion for my vegetarianism. The criticisms I had of the self-injury program were mostly still relevant in the eating disorder program, which I suspected because the two programs were not all that differently run when I had been in each several years ago.

The hospital staff members of the council took me in, asked for my feedback, and lied to me when I gave it. Maybe those in the council (more directors and managers than direct patient care staff) are out of touch with what is actually happening between patients and staff. Maybe they know what happens between patients and staff, but are unable to understand how those interactions might be felt by patients, even when a former patient is sitting across the table telling them what happened and how it felt. Maybe they know exactly what is going on and are ashamed and trying to save face. Maybe they know exactly what is going on, but don't think of it as a problem, but make excuses because they see that I think it is something to be ashamed of and that I would be offended if they didn't think it a problem. Maybe when I say, "she told me to hope, and it felt to me like a punch in the face," they are able to see that as a bad thing because they hear it from my perspective, but they aren't able to connect that to situations where they see their staff encourage other patients to hope, because they are conditioned to view that positively. Maybe it is something else entirely, I can't know for sure.

What I do know for sure is that I made criticisms, they were countered with various excuses that I didn't have enough information to dismiss, and when I went back as a patient, almost all my original criticisms were still valid. Whether they intentionally misled me or not, I feel betrayed and I do not think it is unreasonable of me to feel that way.

I do intend to bundle up all my tendril-squishing posts, clean them up and add in specific details that I leave out here to protect anonymity (names, places, etc.), and send copies to the eating disorder unit, the recent perpetrator of these ugly situations, and to the managerial people who have excused away my criticisms, both because they are the superiors to the eating disorder unit, and to point out their own sins. I don't know that anything will come of that, but I do know nothing can come of it if I don't do it.

Pedantry and Gray Thinking

2010-08-12T14:11:00.000-05:00

I am normally a bit pedantic (perhaps a lot pedantic). I try to avoid absolutes. I tease people when they say things slightly grammatically incorrectly, especially when it leads to a very different, often humorous, literal meaning than they meant. ("I saw that terrible movie in theaters." Really, why did you see it in multiple theaters if it was so awful?) I'm able to exercise restraint with this, I don't tease like this at work or in serious situations. Usually I do know what people actually mean to say, but just tease them to be silly. Sometimes I genuinely don't know what someone is saying when it is ambiguous or I suspect they misspoke. ("Walmart employees asked to stay behind while flood waters rise" Did the employees ask or were they asked?)

When I am a patient in a mental health care situation, I become pedantic to the extreme. I don't do this to tease, I don't do it to be annoying, I do it in an attempt to avoid trouble. It doesn't really work.

In a staffing I said I felt yelled at. They said they didn't yell, being a bit pedantic. I only said I felt yelled at, so whether I really was or not is immaterial. Also, yes, I might take that pedantic approach to tease, but this is not a teasing situation, and it is a common colloquialism for people to say they were yelled at when no voices were actually raised. I revised to say I felt they were reprimanding me. They said it wasn't a reprimand. I revised to say that they had confronted me because they thought I had done something that they thought was sub-optimal, sub-par, damaging, eating-disordered, inadequate and the confrontation caused me to feel crummy especially because I hadn't actually done the thing they were confronting me over. My final explanation was incredibly pedantic, but they necessitated it with their blanket dismissals of my previous explanations. I had to go to a level of irrefutable, literal fact just to avoid getting dismissed. Many patients would give up without being understood, some might not be able to explain themselves sufficiently pedantically. The professionals could have responded differently to me, in a way that wouldn't be so prone to shutting down conversation. (They tell us how important it is to feel heard, but when they shut down conversations like this, they are making it doubly difficult to be heard. If I didn't insist on clarifying, what lesson do they think I would have come away with? The lesson I did come away with is bad enough.) They could have said, "No one here actually raised their voices to you. What do you mean by feeling yelled at? Did you feel insulted or scared or like we were angry, or what?" They did not express interest in understanding me, just dismissed my statements because they were not literally true (although I would argue that, too). I am pedantic for the sake of understanding (or humor), this seems like pedantry for the sake of evasion.

Depressed people are often overly pessimistic and sometimes make unqualified negative statements. ("Today is going to be awful.") Staff often challenge patients when they make those unqualified negative statements, usually with the argument that they do not know for certain that the day will be awful because they cannot know the future. I can deal with that, they are correct and I see their point. But the staff often make unqualified positive statements. They say "today is going to be great" or tell patients to tell themselves that. I confronted a staff member once who made an unqualified positive statement not five minutes after chiding a patient for an unqualified negative statement. I told her that she didn't know that day would be great anymore than I knew that day would be awful. She said, "I'm just trying to get you guys to think positive," and walked away. In similar situations, I have been told I'm just being pedantic. I am perhaps being a bit devious and trying to make a point in these situations, I don't think that excuses their evasive responses. It doesn't change the fact that we are being equally pedantic, but the rules appear differ between positive and negative, patient and professional. There is still this internally inconsistent system of logic being promoted, one that leaves patients entirely dependent on the staff to do their thinking. It is impossible for me to know where they will be reasonable and logical and where they will be arbitrary. Based on my experience, I tend to assume they will eschew logic at most opportunities, leaving me genuinely surprised and in disbelief when I encounter a professional who acts consistently logically and reasonably.

Professionals harp on and on about avoiding black-and-white thinking. Live in the gray! Live in the rainbow! Black thinking and making unqualified negative statements are confronted and refuted. "You can't possibly know that today will be awful because you can't foretell the future." Okay, your pedantic rules. So if I am to avoid black-and-white thinking, yet still express how I feel, I say, "I feel like today is going to be awful, I don't expect anything to go well" I have not expressed an absolute! I have used an "I" statement! I have done exactly what they have told me to do! What sort of response do I get? "You can't possibly know that today will be awful." I know that, but I still feel hopeless, which is why I used an "I" statement and said "I feel" rather than making an absolute statement. "I don't remember what words you used, I don't want to argue semantics." Wait, what? You nitpicked about my words being black-and-white, I conformed to your rules, you accused me of still being black-and-white, I pointed out that I had followed your rules, and then you dismiss me for arguing semantics? (And I'm the crazy one?) If it is that they are focusing on black-and-white thinking over black-and-white speaking, the situation is no better because I acknowledge uncertainty in thought even when I don't acknowledge it in word. How can they know that I do not? They don't ask; they focus on what I say. I can't win if I don't follow their rules because I get a lecture. I can't win if I do follow their rules because they don't notice, I still get a lecture, and they dismiss me when I point out that I followed the rules.

They want us to avoid black-and-white thinking, so when we are prone to unqualified negative statements, shouldn't the counter be gray statements of possibility rather than blindingly white statements of unqualified positivity? I would say yes. Realism is (part of) the gray area between pessimism and optimism. But whenever I would try to establish a realistic perspective with a staff person, a compromise between my black and their white, they would still tell me I was being negative. I was attempting to bring them into the gray zone by compromising and finding realism, but they called it pessimism and insisted on unqualified optimism. If they are going to teach me to avoid black-and-white thinking, it would be nice if they modeled it for me.

"Altruism"

2010-07-26T10:22:00.000-05:00

In the ED unit, we went on a field trip. Except that the staff kept calling it an "altruistic outing." We went to a charity that specializes in organizing food production for hunger relief. The food they produce is then distributed to starving and malnourished communities by other charities that travel abroad to provide various forms of humanitarian relief. We filled bags with their very efficient recipe of ingredients. This use of the word "altruism" was annoying me. It is factually inaccurate.

At breakfast on the day of the field trip, I asked a staff member if we could please stop calling this an altruistic outing. She asked why and I said, "Because it isn't." To which she said, "Well, that's your opinion." So I told her I got my opinion from the dictionary. (I try so hard to be diplomatic, but if you tell me a definition is just my opinion, you are going to get sass.)

Now, it is a matter of opinion that I don't believe pure altruism actually exists (briefly, I think selfishness comes into play, at the very least, in the motivation to action). Another patient mentioned having been deeply offended in a class discussion on the existence of altruism, which she believes is fully possible, but her teacher did not. A third patient told me of a friend that takes in dogs that would otherwise be euthanized because it made her sad to see them die and asked how that is selfish. I didn't want to get into an argument with other patients, so I didn't tell her that she already told me how that was selfish: her friend prevented her own sadness by saving those dogs.

The staff member I sassed about the dictionary asked me, in a disingenuous way, what I would call our field trip. I told her I would say we were going to do something that would be of great benefit to others, but that we were doing it because it would also be of benefit to ourselves and that there is nothing wrong with that. She didn't look very happy with me.

Whether altruism exists or not, this field trip was specifically non-altruistic. It would have been equally altruistic for every patient to send $20 to this charity, but that would never happen. Sending $20 dollars, while it would benefit the charity just as much (really, I made up that number, but I'm assuming that is what our time volunteering was worth), would not give us the same experience in being confronted with the reality of involuntary starvation to contrast with our own voluntary starvation, the contrast of having no food to eat versus our wasting of food. If there were no therapeutic benefit to this field trip, it would be indefensible as part of an eating disorder treatment program, for the hospital and even more so for the insurance companies. The primary purpose of this field trip was our own benefit. That is definitively not altruism. After the field trip we sat together and discussed it. People talked about what they learned about poverty, how much fun they had, that they wanted to go do this again sometime. Then a staff member asked what we learned from the field trip in the context of our eating disorder.

My head nearly exploded.

For me, this situation started out being about the misuse of the word "altruism", but eventually became much bigger. This has happened to me a lot in mental health care: I ask about something relatively insignificant, but the staff respond in such an unreasonable or confounding way, that it turns into something much bigger. In this instance, the bigger frustration was the staff insistence that the staff is always right. There is no, "Well, yes, technically this isn't altruism, but we are still going to call it that because it sounds better and is shorter than your way of describing it," or any other similarly reasonable response. There is no concession that what I've said is true at all, with or without a caveat that their way of looking at things is also valid. My perspective is summarily dismissed (invalidation much?). There isn't much attempt to understand my position, which is something that should be taking place even if what I am saying is clearly delusional. True, this staff member did ask me how I would describe our field trip, but that was after I pressed the matter and after she said, "Well, that's your opinion," which is the sort of response that seems designed to end a conversation. Furthermore, I stood up for myself and I was assertive in this situation, something they constantly preach at us to do. If I was unsure about assertiveness at this point, this is not the sort of interaction that would have encouraged me to be assertive in the future. Rather, I would have learned that assertiveness is hard, doesn't do much good, and garners invalidation.

Language Barriers

2010-07-22T14:06:00.000-05:00

I seem to have a very distinct idiolect. People who know me relatively well can identify writing by it. I also have a decently large working vocabulary. I like language and I like using fun words and I like to try to use the best word for the job, even though that might be an unusual word. I think it adds interest, rather than repeating the same tired words. I do exercise some moderation in this; I don't use synonyms just for the sake of variety when it would feel artificial. Most of the people I interact with a lot are smart with fairly large vocabularies of their own. I do know to adapt to certain audiences; I'm good at doing that with children and people with limited English skills, though I might sometimes realize I've used an unusual word and will follow it with a synonym to explain. Outside of those situations, I usually speak and write in my own customary idiolect. I suspect most people use their normal speech patterns most of the time. I have a few friends who regularly ask me to define words that they aren't familiar with. I am totally okay with that.

Another apparently unique aspect to my use of language is that I try to avoid absolutes, often to an unnecessary degree. Sometimes I will catch myself framing something in absolute terms and then I will add that what I've said isn't strictly true because of other possibilities. "Yes, I am going to be home for dinner tonight. Well, unless something terrible happens, like I never make it home or our house falls into a sinkhole." Sometimes, I can be a bit ridiculous about this and my family and friends will say things like, "Yes, we know. Can we move on?" In avoiding absolutes, I often think in terms of possibility, as in, "This is what I am expecting or believe happened or believe is happening and has the highest probability, but I can't know for sure, yet." I don't want to commit myself to something I am not sure about. I don't want to commit to something that will contradict someone else, implying that they have lied, when I am not sure about it. I don't want to have lied about something because what I expected was not what happened. I spend a lot of time with the subjunctive mood.

When I was in the partial hospital program in February, I mostly talked like my normal self (I did adapt for some of the adolescents, as it was often a mix of adolescents and adults). I figure that the adults and staff could act like adults by telling me that they don't understand me or asking me to define words or whatever they need. I didn't think this explicitly before I went to the program, but it is my general approach to interacting with most adults. When I had the atrocious staffing where I was reprimanded for not going grocery shopping, I realized that the staff weren't understanding me in a basic way. They were not listening to the words I said. When I said, "I am thinking about going grocery shopping," they heard a commitment to grocery shopping. I don't know if they were inserting unwarranted assumptions, or only listening to the gist of what I said and missing the nuance, or something else entirely. I was communicating carefully, choosing the words that would convey the message I intended; they were not listening to my words nearly as carefully. I wondered if I needed to give them a lesson on the subjunctive mood.

I was in the partial hospital program for three weeks. In the last week, during one group, I said that I wouldn't know what to choose as my ideal body size, because I really didn't want to have a physical body at all and mentioned that I think of people as abstract entities of their non-physical characteristics. People were confused as to what I meant by that, so I explained. In the ensuing discussion, I learned that many other patients often understood very little of what I said because of the words I used. I had defined words for people a few times, when they asked (and only other patients asked), but didn't realize how much people weren't understanding. In this discussion, the staff members seemed to agree with the general consensus that I use too many "big" words. I don't know for sure that any staff members needed any of my words defined, but no staff members had asked for definitions, and since so many other people weren't understanding my words, I began to suspect the staff weren't understanding my words much better.

I'm willing to give other patients a pass on not bothering to ask me for clarification so that they could understand me. Their job being in the hospital program was primarily to get better themselves. However, I am not willing to give the staff the same pass, because part of their job is to understand me. It seems they didn't understand my use of the subjunctive mood and avoidance of absolutes and that they probably didn't understand all of the words I used. While I often tried to clarify with them my understanding of what they were saying, I don't remember them asking me for clarification much, even though there were many misunderstandings. When I knew I had been misunderstood and wanted to clear things up, I sometimes managed to get them to let me clarify for them, but I often did not. I doubt that is good practice for a mental health care professional.

Assertiveness

2010-05-28T14:25:00.001-05:00

In hospital treatment programs, assertiveness is a regular topic. The professionals teach us to be assertive, presumably, because mental illnesses can cause people to be overly passive, overly aggressive, or overly passive-aggressive, and because assertive communication can help rid our lives of the unnecessary stresses of sub-par communication. When they teach assertiveness, they are advocating for a communication style that is respectful, diplomatic, open, honest, and genuine. I have been taught this communication style in every hospital program I've been in, but I didn't learn to value this communication style until later, and even then it was despite, not because of, the lessons I was given by hospital staff.

I think it is fair to assume that if anyone is going to be receptive to assertive communication, it should be the hospital staff who are teaching it. In my experience, however, hospital staff have been the people least receptive to my attempts at assertive communication.

I have assertively taken responsibility for my role in misunderstandings and been left hanging by the staff who also had a role in that misunderstanding. Then, when I expressed how crummy it felt to be left hanging like that and asked for an apology, I only got a disingenuous apology, and no one took responsibility for their role in the misunderstanding.
When I was in the hospital this last time, I was told to ask for information about weighted blankets, so I did, everyday for a week. I asked on my "check-in" sheets where it asks if I have any questions, and I asked several staff members in person. I was employing an assertiveness technique they have taught me many a time in hospitals called "broken record." I never did learn what I wanted to about weighted blankets. It wasn't until I asked on my second to last day there, in capital letters to express my exasperation about this, that they either educate me, tell me what they were doing to get that education for me, or tell me why they could not procure that education for me, that I got any response (an order form for purchasing weighted blankets from some company, not at all the information I had asked for).
When I object to a therapeutic technique, for example, by asking them not to assume a positive future for me in the same way they tell me not to assume a negative future for myself, I have usually gotten some thoughtless, dismissive response like, "I'm just trying to get you to think positive," or, "you need to be focusing on yourself."

When the hospital staff verbally teach assertiveness but do not create an environment hospitable to fledgling attempts to assertiveness, it teaches me that assertiveness is not as great as they make it out to be. I know that not everyone will be receptive to assertiveness, so when even my assertiveness teachers (who I expect to be the most receptive to assertiveness of anyone) are unreceptive, that tells me not to expect anyone else to be receptive to assertive communication. When I try to be assertive and I get these sorts of responses, it teaches me that assertiveness does not work and that I would be better off not using it. I think it is fair to expect that the staff would be receptive to assertive communication and to facilitate that to make those first fledgling attempts at assertive communication easier and more rewarding. I think it is fair to expect that the staff would use situations that come up between patients and themselves as a training ground for using these assertiveness skills rather than, apparently, treating assertiveness as something for patients' interactions with others in their lives and not for their interactions with the staff in the hospital. When the hospital staff teach me assertiveness but do not practice it themselves and are not receptive to it, it teaches me that the hospital staff are hypocrites.

In my last time in the hospital, we discussed staffings in community group, which is for discussing the program as a whole and resolving problems in the dynamics between the patients. One other girl and I were most vocal about how awful staffings are. We said that we often felt attacked or reprimanded in staffing, which makes us dread future staffings. The dietitian, who was running this group, suggested that we speak up for ourselves and use our assertiveness skills to make staffings go more smoothly. Presumably, the staff know that assertiveness is likely to be difficult for us, since they spend so much time teaching us to be assertive, yet they insist that we use assertiveness skills, solo, in the moment during staffing rather than facilitating a better staffing experience by asking us during staffing how we feel going into it, if we are dreading anything, how we feel afterward, if there were any awfulnesses that needed resolving. (It might not be fair to expect them to do this, but it is indicative of their wishy-washy thinking about patients, acknowledging that assertiveness is difficult for us in some situations but assuming it isn't a problem in other situations. Pick one for consistency or be sensitive to the individual.) As I learned by using assertiveness skills during staffing, being assertive makes staffing feel worse because it adds the frustration of having the staff be unreceptive to my assertiveness to the rest of the awfulness that happens during staffing. When I have spoken up to say that it felt like they were reprimanding me in staffing, the only response I got was they had not reprimanded me. I had already done in staffings exactly what the dietitian suggested, and it made staffing a worse experience.

I would ask that the staff use the interactions they have with patients as an opportunity for patients to practice assertiveness. This means taking the time to be genuine and thoughtful in most every interaction with patients. I would ask that staff encourage and facilitate patients' fledgling attempts at assertiveness; make assertiveness easy and rewarding. If you facilitate the assertiveness in this way, these fledgling attempts are more likely to be successful rather than starting out as assertive and devolving into something else. Answer the questions that patients ask and ask if they are satisfied that it has been answered. Engage patients who especially struggle with initiating assertiveness by inviting them to practice assertiveness: ask them if they are unhappy with anything about their time at the hospital (How's the food? Do you need any extra blankets? Is there a group you find especially helpful or want more of?). Don't attack if they criticize! Take it in stride, apologize, explain why things are that way, offer to change something, suggest a solution or compromise. Assertiveness doesn't mean getting what you want, but not getting what you want can be a disappointment and discourage someone from using assertiveness in the future. Soften the blow of disappointment: rather than just saying "no," explain why you cannot give the patient what he/she is requesting, offer a compromise, tell them what they can do to change things. It isn't just about being receptive to assertiveness either, but modeling assertiveness as well. Rather than making demands of patients and speaking in the imperative mood, ask them to do things, tell them why you think it is a good idea, explain rules (even if only to say some standard was needed, but that the standard itself was arbitrarily chosen), offer your perception of them and their situations as a suggestion rather than declaring it as fact (and be open to revising your perception). Respect patients; there is a power differential, but strive to make it feel as small as possible.

No Empathy

2010-03-26T15:07:00.000-05:00

The first staffing that I mentioned before also included another, separate mess that I tried to clear up in the second staffing, but only got worse.

In the eating disorders program, partial hospital patients are supposed to follow their whole meal plan when they are at home. Patients are not supposed to weigh themselves. I did not follow my whole meal plan for the first week and I did weigh myself. There were daily "check in" sheets to fill out with what we ate for dinner and whether we had used any eating disorder "behaviors"*. I lied to the staff on these sheets and I lied to the staff when they asked me about these things. I did not trust the staff or the hospital program and I acted on that distrust by restricting what I ate and by weighing myself. Eventually, when I trusted a little bit more, I started eating my full meal plan. Because I was weighing myself, I saw that my weight wasn't increasing and I was able to trust a little bit more. At that point, I started being honest with the staff and on my "check in" sheets about weighing myself and not eating everything I was supposed to.

I was upfront with the staff about my distrust of the hospital program and the staff. I wrote my psychiatrist a letter that described several areas of distrust. She had read that letter before I went to the hospital. Hospital-therapist read the letter when she did my psycho-social assessment. Hospital-dietitian read the letter when we had a meeting to establish that I am a real vegetarian (as opposed to an eating-disorder vegetarian) and that I was not willing to compromise about my vegetarianism. I mentioned several times in conversation that I did not trust the program or the staff. I'm pretty sure I made my distrust clear.

By the time of the first of the two disastrous staffings, I had been honest with the staff and on the "check in" sheets for a few days about what I was eating and about weighing myself. The dietitian expressed surprise at the fact that I was weighing myself when it came up in the staffing. Though that may not have been a reprimand, it felt like one (I don't care if that is unreasonable because I can't change how I felt about it into something more rational). I had written on the "check in" sheet for the past few days that I had been weighing myself, so, as far as I was concerned, I had done my part in communicating this "behavior" to the staff. It was not my fault that the dietitian didn't know I was weighing myself. My psychiatrist asked why I was restricting and weighing myself. I said that I did not trust the staff or the program. I said that weighing myself actually gave me a tiny amount of trust in my meal plan and that it was a large factor in my beginning to follow my meal plan, though no one seemed interested in that genuine positive. The staff were pointing out ways in which my behavior was sub-optimal in the context of the hospital program. They may not have been angry, scolding, or disappointed in me, but that is how it felt. It felt like an attempt to shame me into reform.

Later, I asked the dietitian if the "check in" sheets were meant to be a device of communication between the patients and the staff and she said that they were, but that the therapists usually took them. Hospital-therapist never spoke up and said, "Oh, maybe I should have showed you Jessa's 'check in' sheets because they had information you would have wanted to know." Hospital-therapist said nothing, just letting me sit in the discomfort of the dietitian's surprise, letting it appear that I was responsible for the misunderstanding, or at the very least, not acknowledging that the misunderstanding was largely because she dropped the ball on communication.

When I reflected on the staffing, I thought it was absurd that the staff would react with surprise at my acting on my distrust of them and the hospital program. I made my distrust very clear; it would have been more reasonable than not for them to have expected me to act on my distrust. I thought about how I would have liked to have seen that situation handled: with empathy. I would have liked them to acknowledge that acting on my distrust was an understandable thing for me to have done, and perhaps that my distrust was reasonable given my past experiences. Empathy would have validated my feelings of distrust and made the whole confrontation feel less accusatory, but I did not feel any empathy from anyone in the room in response to my situation. This seemed inconsistent with what they taught me about the importance of empathy and validation and good skills for relating with those around me.

At the next staffing, I brought this up. I had already established with the staff individually that I had done my part in communicating my "behaviors". I told them that I did not feel any empathy from any of them, when it seemed like empathy would have been the proper response, especially within what they teach us of relating to others. My psychiatrist cut me off and accused me of black-and-white thinking when there wasn't any (more about black-and-white thinking later). Hospital-dietitian said that perhaps there wasn't any empathy in the room for my situation. I was shocked. Right away I did the logic to notice that, if I could assume that this was a genuine possibility from her perspective, she had just admitted to me that she personally had no empathy for my position (because if she had empathy, a lack of empathy in the room would not have been possible from her perspective). I did the logic, but the result was so egregiously awful and shocking that I didn't fully believe it until later when I could slow down and say to myself, "Yes. She really did say what I think she said." I think my psychiatrist may have noticed what hospital-dietitian had implied about her own lack of empathy, because she immediately followed what hospital-dietitian said to say that she had felt empathy for my position, although she had perhaps not expressed this. Hospital-therapist was, again, silent throughout. There was no recognition that the lack of expressed empathy on their part was perhaps a lapse in good relationship skills on their part. There was no recognition that it was reasonable of me to expect that they would have expressed empathy or that it was reasonable for me to feel slighted when that expectation of empathy went unfulfilled.

----
* In the hospital, there is a lot of intentionally ambiguous talk about eating disorder "behaviors". I put it in quotation marks because it is a use of the word that is particular to that context. "Behaviors" include things like purging, restricting what you eat, weighing yourself, taking laxatives, over-exercising, etc.

No apologies

2010-03-12T11:43:00.002-06:00

When I was in the hospital program I had two really bad staffings in a row. In this program, we had staffing once a week, with our psychiatrist, therapist, a dietitian, and usually an intern or student. (I believe the UK calls these "ward rounds".)

In the first atrocious staffing, I was confronted for not following through on a commitment I had made. I was confused because I was fairly certain I hadn't made any commitments I hadn't followed through with. I tend to be very reluctant to make absolute commitments because of the possibility of extenuating circumstances. I am even more reluctant to make absolute commitments within mental health care because I do not trust the staff to believe me if there are extenuating circumstances.

I learned that when I had made a grocery list the week before that the staff thought I was committing to going grocery shopping over the weekend. I was making a hypothetical grocery list all. It was, to me, a list of the sorts of things I might buy and I also listed some of the sorts of things I might cook. I never said I intended to go purchase the contents of that list because I didn't intend to do so. If I was making a grocery list for shopping that weekend, I would have approached it differently; I would have planned specific meals and I would have based my list off of those. And really, it was an inappropriate list if I meant to buy all of it that weekend. I was eating two to three meals a day at the hospital; that list would have given me more meals than I could have eaten before the food would start spoiling. I had discussed grocery shopping with a therapy intern. She asked me to make a list before I left the program that day and to review it with a dietitian, so I did. If the dietitian thought I meant to go shopping with this list, shouldn't she have noticed it was inappropriate?

When I was confronted about not following through on my supposed commitment to go grocery shopping, I explained all of that. We eventually came to the agreement that it was a misunderstanding. I took responsibility for my role in the misunderstanding, even though there was nothing I could have done to prevent it. I tend to frame things as possibilities because I do not want to commit to knowing things that might end up untrue or commit to doing things that I might not do. I avoid absolutes to an extreme because I am uncomfortable with unduly excluding possibilities. The staff made assumptions that are maybe usually appropriate assumptions to make, but that do not apply to me. At one point I had said, "I am thinking about going grocery shopping." From that, the dietitian assumed I intended to go grocery shopping. The dietitian asked what I would think if she said, "I am thinking about letting your weight stay where it is." I suspect she meant to catch me making the same assumption she had made, but I told her I would think that meant that she had not yet decided whether to let my weight stay the same, that there was some aspect of it that was unsettled, that she was actively considering the possibility. She seemed surprised by that.

When I left that staffing, I felt crummy and I was angry. Being confronted about something I've done wrong doesn't feel good. Whether it was or not, it felt like a reprimand; it felt like getting yelled at even if no one raised her voice. No one apologized to me for confronting me once we agreed it was a misunderstanding. I took responsibility for my role in the misunderstanding, but no one else did. I don't think anyone actually told me to take responsibility for my role, but it felt somewhat compulsory, it felt expected of me, I felt they would blame me for it anyway. It also seemed like the right thing to do and I would have done it even if it didn't feel compulsory. I value respectful, open, and honest communication, which they teach us to value in the hospital program, but which I learned to value on my own. I think taking responsibility for my role in a misunderstanding is a part of that communication style. When no one else took responsibility for their role in the misunderstanding, it felt like I was being blamed, whether I was or not. The only responsibility for the situation that was assigned was assigned to me, even though I took that on myself, resting the whole mess on my shoulders. That felt crummy. That also felt hypocritical coming from people who were trying to teach me good communication skills, but who made me miserable when I used them.

Later that week, I talked to the therapy intern who had originally suggested writing the grocery list. She had not been at the staffing. I told her that I felt blamed for the misunderstanding. We noted that there was nothing anyone involved really could have done to prevent it. Despite that, she did take responsibility for her role. She apologized for misunderstanding me and for how that factored into my atrocious staffing experience. We came up with a way to prevent future misunderstandings: if she thought I was making a commitment, she would double check with me. To prevent all misunderstandings would probably be impossible, but commitments seemed the most important to keep clear. I felt really good about that.

When I went to my next staffing, I confronted the staff. I said that it didn't seem right that I didn't get an apology for their having confronted me, making me feel crummy, once we agreed it was just a misunderstanding. They told me that they couldn't know that being confronted made me feel crummy. They gave me a lip service apology, but they still didn't seem to think an apology was warranted. I was stunned and angry, but could see I wasn't going to get any further with that. I told them that it felt blaming for me to have taken responsibility for my role in the misunderstanding when no one else in the room did. The dietitian said that there was nothing she could have done to avoid the misunderstanding. She said she was told that I was going grocery shopping when she was asked to review my grocery list. She eventually said, "I'm sorry I misunderstood you, but..." and reiterated why it wasn't her responsibility. It was a lip service apology; she didn't seem to think there was any reason for her to take any responsibility, even though her primary excuse applied equally to me and to the therapy intern and we took responsibility for our roles. I was stunned and angered and again saw I wasn't going to get any further. I was livid about how the whole thing went.

Later, as I thought about this situation more, I only got angrier. It is fine for them not to know absolutely that I would feel crummy about being confronted, of course they can't. However, it is absurd for them not to be sensitive to that possibility. Even I am confident that being confronted like this usually feels crummy for most people. In their job, they are confronting patients everyday, for them not to be sensitive to how hurtful that can feel for the patient is a serious oversight. They also seemed to feel a bit crummy themselves when I confronted them; they seemed rather defensive. Furthermore, whether or not being confronted felt crummy for me, an apology was warranted. That is the sort of communication skill they teach us but do not use themselves, which I deplore. That the dietitian was unwilling to take responsibility for her role in the misunderstanding, but despite the therapy intern and me taking responsibility, was also deplorable. Again, taking responsibility is a communication skill they teach me, but do not use when interacting with me, as a patient. I found the lip service apologies insulting. It was disingenuous and I suspect they did it more to stop me from further pressing the matter than anything else. That does not square with the good communication skills they try to teach their patients, either.

How my little yellow tendril survived

2010-02-25T11:40:00.000-06:00

I did end up going to the hospital program. I wasn't inpatient, I was in the partial hospital program, which means that I was there six hours a day, six days a week, for three weeks. By the time it was over I was seething with anger every minute I was there and ranting aloud alone in the car to and from the hospital. Picking up on my tendril analogy, they weren't able to actually squish my little yellow tendril, but they stomped and hammered on it mightily; it was saved by a protective shell that it has grown since I was at the hospital last.

In the hospital, the staff lie to me about myself and about the reality of the world around me. They contradict themselves, they teach me one thing verbally and teach the opposite through their actions, they simplify problems to such an extent that the solutions they propose are useless in the messy real world, they bully me into treatment angles that are actively harmful to me, they offer me platitudes and expect that to be helpful, they state generalizations about depression and anxiety and depression as hard fact. In the past, this has squished my little yellow tendril of health. I would hear and see these things and think something wasn't quite right. When I asked them about things seeming "off" or contradictory they would tell me to focus on myself rather than on the theory behind the treatment, which was just another blow to my tendril. When I would dispute the accuracy of their "facts" they would tell me I was wrong. They would misunderstand me and brand me as manipulative and Borderline (as in the personality disorder) and ignore my attempts to clarify the misunderstanding. They would tell me that I was thinking in extreme black-and-white, all-or-nothing terms even while I was actually fighting for recognition of an extra gray zone they seemed blind to.

This used to leave me more depressed than I went in because I trusted them. I thought to myself, "these are the professionals, they know what they are talking about, I am the crazy one, so perhaps my perception is off." I concluded I was much more out of touch with reality than I really was because my perception of reality differed so much from what they were telling me. I believed them when they told me I was manipulative and Borderline because, although I honestly didn't see those things in myself, I figured that someone who really was manipulative and Borderline wouldn't admit to those things, even to herself. I started seeing a lot of my interactions within the framework of being Borderline. When they stonewalled my attempts to clear up the misunderstandings they had of me, I figured that was probably them tough-loving the Borderline out of me. When their solutions to simplified versions of my problems didn't seem helpful, as in cognitive-behavioral therapy, I blamed myself for not trying hard enough because they told me it didn't work for just that reason. When their "facts" about my illnesses didn't resonate with my own experiences, I figured that I was beyond help because even the professionals who specialize in my sorts of problems didn't understand me. I figured I must really be blind to my own black-and-white thinking if I was so deluded to think that I was arguing for a gray area they didn't see.

I went into the hospital with a protective shell that my little yellow tendril could grow into. This time, I went in distrusting the program and all the staff. I went in knowing that it wasn't my perception that was off, but that the staff seemed to voice selective parts of reality rather than the whole messy thing with all its nuance. I went in knowing that, while a lot of my actions might outwardly look similar to those of a Borderline patient, this was based primarily on mis-attributions of motives to those actions. When they stonewalled me, I figured this was due more to their rigidity in thinking, avoidance of cognitive dissonance, and lack of self-awareness rather than being a reasonable treatment tactic. I went in confident that oversimplified solutions to oversimplified problems really were inappropriate solutions in the messy real world, especially for someone who insists on recognizing nuance. I went in confident that there really were gray areas of nuance that are real that they simply can not or will not recognize. I went in knowing that they are looking so hard for black-and-white thinking that they might find it even where there is none (a la "when all you have is a hammer, everything looks like a nail"). So when they stomped on my little yellow tendril of health, I didn't turn that on myself and believe it was because I was wrong, I became livid. I was even able to be okay with the fact that I was angry because I have since learned (not from them, despite their attempts) that anger is a reasonable reaction when you have been wronged, and I felt they were wronging me egregiously.

I got to see my new outpatient therapist a couple times while I was in the program and she is amazing. Talking to her about my frustrations with the treatment in the program was incredibly validating. I have never felt so validated over mental health care before, even though I actively seek it out. I needed that validation sorely after spending so much time being actively invalidated in the hospital program. Other patients have agreed with me about the problems, but they are also considered not-credible witnesses within mental health care, so the validation I have gotten from that is minimal. When I talk to mental health care professionals who have not cared for me, sometimes they express dismay that the things I object to are going on in mental health care at all; they insist that they would not do those things. I am very skeptical of those claims, but I feel it would be rude to say since they have already done more than most mental health care professionals by being willing to talk with me about it at all. When I talk to some professionals, like over at Mental Nurse, I do feel some validation when they recognize and commiserate about problems in mental health care, but it feels so far away and they have not experienced exactly the same situations as I have. When I talked to new-therapist, she had experienced some of the same staff people by interacting with them as the outside therapist in the interest in communication and continuity of care. She agreed with me on (almost?) everything that I complained to her about the treatment for. She was even able to point out that it is a self-selected bunch who work in hospital settings and some of the institutional culture is part of the reason she doesn't work in a hospital setting. That she was able to make those additional observations along the same lines as my own was, I think, part of why talking to her about it was so outstandingly validating. The validation she gave me helped be be even more confident in myself, that I was right about things, while I was in treatment, although the more confidence I had about that the angrier I got in the treatment program. Eventually, once I was eating in a sustainable way (which was the primary goal of my going to the hospital program) and had maxed out the benefit I could get from the program, and once the treatment was only giving me an additional problem to deal with, the treatment itself, she helped me convince the hospital-therapist that it was time to discharge me. I am actually optimistic for how therapy will go with new-therapist, something I never expected to be possible.

This time in the hospital has confirmed in my mind a lot of the problems that I have seen in mental health care. It has confirmed for me that when hospital staff, who are on the hospital advisory council with me, say that things are different than how I last experienced them five years ago, that this isn't entirely true. I have lots of stories and examples to give now; fresh ones, remembered with more detail and attempts at understanding why the staff do what they do. I shall label them "tendril-squishing".

Little yellow tendril of health

2010-01-28T14:46:00.002-06:00

My psychiatrist has said that I can meet with her and my outpatient dietitian and some of the team from the local eating disorders program (this is at the hospital for which I am on the patient and family advisory council). At this meeting we will be able to discuss my concerns with going to the hospital and making it a safe place for me. When I'm talking to professionals, even when I am just as clear about things as I am here, I seem to have trouble adequately conveying to them how hurtful and unreasonable I find much of the treatment I have been given. Last night, in anticipation of this meeting, I thought of a couple extra angles to approach this from.

When I am in treatment, I often challenge or question the therapeutic methods being used. I challenge the banning of the word "should", I question the realism and usefulness of affirmations, I ask about the lack of morality, and sometimes I point out the hypocrisy of the staff. When I do these things, they are a glimmer of the healthy me poking out from all the depression and fear and crap. That is me using my brain and thinking critically, which is what I do when I am well: I don't take things at face value, I am curious, I take into consideration the full complexity of the world as much as possible, and I avoid overly simplistic explanations. When I challenge or question the staff, that is also a little glimmer of me being assertive, which I am more able to do when I am well. It is also a glimmer of me being honest about how I feel about the treatment, of telling the staff ways in which the treatment is not working for me, and of giving them ways to make the treatment more effective for me. When I point out hypocrisy in the staff, that means that I have internalized what I have been taught enough to notice when the staff aren't following the same rules they set for me, like when a child notices her teacher spell a word incorrectly on the blackboard. Generally when I point out hypocrisy, it is because I think treatment would be more effective if the staff were actually modeling the skills they teach patients, so that we can learn them better and practice those skills with staff in situations that actually arise in the course of treatment. Sometimes I point out hypocrisy in staff because I am frustrated about the treatment I am receiving, which I think is valid and important for staff to consider even by itself.

I would compare having aspects of my healthy self coming out in treatment to a tiny fledgling tendril of a new plant poking out from under the soil. My tendril is yellow. I would compare what staff have often done in response to seeing my tiny yellow tendril poke out to smashing it with a sledgehammer to destroy it. They deflect or redirect my attempts to ask them about the therapeutic methods and tell me to focus on myself rather than on challenging them. Each time they do this, it gets harder for my tendril of health to summon the energy to poke up from under the soil. Rather than capitalizing on the health I still possess, they destroy it. I think that the staff want to destroy my tendril because it is yellow, whereas they are expecting the tendril of health to be green. I think that they might assume that any tendril that is not green is a tendril of illness, of resisting treatment and trying desperately to hold on to the eating disorder. I think that staff tend to have an expectation of what the tendril of health will look like and seek to elicit that particular tendril. I suspect that when I challenge the usefulness of affirmations, staff have assumed that I do this simply in order to avoid treatment, rather than to avoid treatment that I think will leave me worse off than I started and to find something more helpful to me. When my yellow tendril of health -- of challenging and questioning treatment, of thinking critically and standing up for the reasonableness of doing so, and of pointing out what isn't working -- stops poking through, I am more depressed and anxious, I am second-guessing my entire conception of reality, my capacity for critical thinking, and everything I know about myself. If the green tendril, the version of health that the staff are expecting to see, is being agreeable to what the staff say about me, doing affirmations without protest, and not expressing beliefs about mental health that clash enormously with the status quo; and if that tendril is seen from me, I am probably much worse off than I was with the yellow tendril, I have probably given up getting better in a genuine way for getting out of the hospital by giving the staff what they want to see.

So much of the oppressive sense I get from being in mental health care surrounds having my intelligence insulted and being told (in many different ways) that I'm not allowed to think critically about therapy. I wonder what would happen if Virginia Woolf or Hannah Arendt or a college philosophy professor were a patient in a psych unit. Would they be expected to abstain from using the word "should" without protest? Would they be branded as "manipulative" for using the word "conspicuous" immediately following a panic attack? Would the staff assume they are resisting treatment because they point out the conceptual deficiencies of a too simplistic explanation of cognitive distortions? I don't mean to imply that I possess the extent of genius of Virginia Woolf or Hannah Arendt, but it seems like staff react poorly to patients outside a set range of intelligence and intellectual engagement (whether those patients be too intelligent and too engaged, or not intelligent enough and not engaged enough, I have seen it both ways).

Please don't let the hospital hurt me

2010-01-23T17:44:00.000-06:00

I am relapsing hard and my psychiatrist is, I fear, very close to putting me in the hospital involuntarily if I don’t sign myself in. I have been stubbornly refusing the option of going to the hospital and I don’t think she entirely understands why; I don’t think she understands how dangerous I find the hospital. I wrote her a letter to explain why I’m resisting and what it is about the hospital I am resisting. I haven’t given it to her. I’m worried that she will ignore it all, refuse to help make the hospital less dangerous for me. I know she knows me better than that; we’re on an advisory council to the hospital and she has read my thesis (link in the sidebar). But that doesn’t make me not worry that she will disregard all of that.

Dr. ---,

At this point, hospital seems like a foregone conclusion.

I know that I need more support with eating than I am getting right now. I know that full well. I’m not opposed to going to hospital because I will have to eat there, if it was just that, this wouldn’t be such a problem. I’m opposed to going to hospital because it so often turns out so bad for me. I have only ever left the hospital once without being more depressed than when I went in, out of about 10 admissions. It might be a place where I can be safe physically, but the hospital has historically been very unsafe for me in every other way. It seems absurd to me that you and my dietitian would expect me to be willing to go to a place where I have been treated so poorly in so many ways.

If I consent to going to day hospital or inpatient, will you back me up and help make the hospital a safe place for me? Help me not leave worse off than I went in?

I am not willing to eat anything non-vegetarian, fake meat, mushrooms, eggplant, or pasta sauce that is the color of dust. I’m willing to talk about why and I am willing to make up for it with ensure if I have to. I am not willing to negotiate about it.

It is not okay for staff to not believe me about how my eating disorder started and fish around for some other origin. It began how I have said it began. I have nothing else to offer in that regard. Fishing around for some other cause is insulting and counter-productive.

Things like yoga and breathing exercises have not worked for me in the past, but I do know that things change. I am willing to try these things again, but if I still react to them as I have before (yoga tends to make me anxious, hostile, vulnerable and more uncomfortable in my body than I began), I will not continue. It is not okay for staff to simplistically call this “non compliant”. I call it “being sensible by not doing things that are actively counter-productive by making me worse off than I began” (and that “being sensible...” is generally why I will refuse to do things; I will be reticent to do things I fear, but I will not flat out refuse in the same way).

It is not okay for staff to insult my intelligence. I will not accept optimistic promises that no one can keep. I have often been told, “if you work the program, the program will work for you.” If I get better, it has nothing at all to do with anyone’s having made that promise. What of the people who have died of their eating disorder? I am confident that people have made the same sorts of promises to many of them. I will not accept being lied to. I will not participate in unrealistically optimistic affirmations. I will not accept being told that everyone in the outside world communicates in the same straightforward, honest way in which staff encourage patients to communicate. I will not accept being labeled “manipulative” simply because a staff person doesn’t realize how large my working vocabulary is.

I insist on nuance. If staff expect to teach me about “cognitive distortions”, they must be willing and able to recognize that “cognitive distortions” also serve as “cognitive shortcuts” that are necessary to keep our brains from exploding and that all of us use every day. If they are not willing and able to recognize that, they will not be able to discuss “cognitive distortions” with me usefully because they will not be able to help me sort the useful shortcuts from the problematic distortions. I will not eliminate the word “should” from my vocabulary. I understand that this is a tactic to prevent patients from overly burdening themselves with a sense of obligation, but the word itself means much more than that.

I will not accept being stereotyped. A lot of the stereotypes of people with eating disorders are actually complimentary to them, but that does not make stereotyping us okay. It is not okay, for example, to write on my discharge paperwork that I am not purging. While that was true, I was not purging, it was irrelevant and insulting because I never had, and never have, purged. I will not go along with what staff think of me or what they think my “real” problems are simply because they are staff if those things do not ring true. I have made that mistake in the past and I do not intend to repeat it.

I expect that I would be a nightmare of a patient. It isn’t that I am unwilling to engage in therapy or treatment, but that I am unwilling to accept modes of therapy and treatment that are thoughtless or insulting to me. This is about self-preservation. My self-esteem at the moment is not particularly bad, but it will be if I let staff walk all over me in these sorts of ways.

jessa

It isn't about the food

2009-12-31T10:24:00.000-06:00

The food is a proxy. It's a proxy, it's a proxy, it's a proxy. Okay, I get it; it's a proxy. I have heard this so many times. Maybe there are people who have eating disorders who have not heard that food is a proxy and who have not figured this our for themselves. There are probably a lot of people who don't know the first thing about eating disorders and who do not realize that food is a proxy. But I know; you've told me; can we please move on? Because telling me that food is a proxy over and over again isn't going to make food stop being a proxy. (Although, no one has ever used the word "proxy" in this situation when telling me this, which is sad, because "proxy" is an excellent word.)

(If food is a proxy, it isn't really the eating disorder that is the real problem, so why is it diagnosed as such? Maybe, before one figures out what the actual problem is, one can use an eating disorder as a proxy diagnosis until the real problem is determined.)

Why doesn't knowing that food is a proxy make it stop being a proxy? For starters, just because you know it is a proxy doesn't mean you know what it is a proxy for. Even if you do know what it is a proxy for, it is a proxy for a reason. For me, my eating disorder is a proxy for my depression and anxiety. With depression and anxiety, there isn't a good way to "act out" in frustration and madness, you have to look elsewhere. I looked to starving myself and, later, cutting myself. Some people look to alcohol or drugs or sex or shopping or eating or video games or suicide or any number of other things (and I think diagnoses of those behaviors should be considered proxy diagnoses as well). If I didn't act out on my depression and anxiety in some way, I would have to experience its full extent. Even when I didn't act out I still created an inner proxy of believing that I was a horrible terrible person who deserved the most severe punishment available. I was so miserable even with these proxies, I can't imagine how I would have survived without them, I can only guess that I would have become more psychotic than I did.

The first time I got sick, the development of my proxies was fairly clear and intentional, they were means to ends, solutions to problems. I was experiencing a miserable punishment, and deciding that I deserved it made it easier to accept that punishment. My thoughts tortured me with their obsessive repetition, so I decided to get a new set of obsessions, for variety. My new obsession with starving myself made me think about food, calories, pounds, measurements, in addition to the ruminations on my failures at being a human being. Acting on my new obsessions gave me both a way to punish myself for being such an awful human being and a way to improve myself and atone for my sins. Later, when even starving myself wasn't an acute enough punishment and atonement, I began to cut myself, which gave me a more immediate method of achieving that punishment and atonement, and gave me a way to feel something other than emotional pain. I've believed for a long time, even when I was doing well in recovery, that if I had to do it over, experience that depression again, that I would absolutely do the same thing: starve and cut. It was the only way I survived; it was relatively successful as a means to an end.

Relapsing is strange. The first time I felt compelled to starve myself, I didn't have any troubles with body image beforehand, I was already relatively thin and I didn't care. This time, I do have those body image troubles and I am not so thin to begin with. The first time, I did, of course, eventually begin to have sincere body image problems, which is why I have them now. Based on what I've come in with this time, food is less of a proxy than it was last time. Although it is still clearly a proxy for some things this time around, there are also some problems this time that the desire to lose weight is the obvious, non-proxy response to. There wasn't the clear decision to choose my proxy this time around, it was automatic. Maybe it is like muscle memory; depression = starve.

Perhaps it will be different this time

2009-12-15T13:54:00.002-06:00

Every other time I've been in therapy, I haven't been there to work through any specific problem. I was in therapy because I was depressed, anxious, starving myself, cutting myself. But there was never any specific problem to work through, which I expect is a significant part of why it was so unhelpful. Despite many professionals often telling me that my problems were physical/biological/chemical, they also insisted that I be in therapy. I guess the idea was that it would help me cope while I waited for drugs that worked. While it did largely function as a waiting room, it wasn't particularly good at helping me cope. I had to fight therapists who wanted me to do yoga to relax (makes me anxious, hostile, even more uncomfortable in my body), relaxation tapes/guided meditation stuff (makes me anxious, makes my body feel even more like a foreign intruder than usual), slow conscientious breathing (more likely to start a panic attack than end one), "reframing" my thoughts (i.e. "maybe she didn't respond to my letter because she hasn't received it yet, not because she hates me and is too nice to tell me to stop sending annoying letters;" frustrated me with their lack of nuance), affirmations (it frustrated me with their blatant lies and lack of nuance, I found it unethical, it terrified me because I used the reverse of that method on my way down), and so on. Most of the time, therapists would keep pushing these things despite my objections that they didn't work and even made things worse. They were never willing to discuss why these things didn't work or adjust their tactics at MY objection.

There was talking through problems, too, but that meant skirting the issue: I wasn't depressed because of these problems and distorted thoughts, I had these problems and thoughts because I was depressed. All that talking through issues seems a waste, since most of those issues disappeared once I got on some drugs that actually alleviated the depression and anxiety. Some of those "problems" and distorted ways of thinking even helped me cope with the depression and anxiety, I had deliberately put them in place for that very reason; getting rid of those ways of coping before getting rid of the depression and anxiety always seemed dangerous to me. I was given many assurances that, by letting go of those double-edged coping methods, the depression would abate. They said the depression wouldn't go away until I let go of those ways of coping. But then the drugs started working, and I felt better, so I didn't need those ways of coping anymore, and I slowly quit them.

There were a couple things that never really got resolved in therapy, that might have actually been useful to resolve. When I was un-depressed, I pushed these things far enough to the corners of my mind that they didn't cause any trouble, though they were still upsetting. In therapy, I don't think it would have been possible to extract the things that would continue to be troublesome from the things that wouldn't. None of them are things that were problems before I got depressed. There wasn't really any indicator of how these things might have been different from the others. No therapist would have been helpful in figuring out what would linger once the depression left, because they thought all of my problems needed resolving; none ever thought that un-depression would make any of these problems vanish as thoroughly as they did. (In a lot of ways I am still weird in the ways I was when I was depressed, but it is now mild enough not to be a problem for me. My intensely crushing pessimism was a problem when I was depressed and I am still a pessimist when I am un-depressed, just not to a problematic degree. Although some mental health care professionals would, I suspect, disagree. And others might disagree that my un-depressed pessimism isn't crushing.)

Perhaps now that I have actual discrete problems that I want to solve, which seems to be what therapy is more useful for, therapy will go better this time. I will have to lay down the law. "These are the problems I am here to solve. This is something many other therapists have wanted me to solve. I am not addressing it because addressing it will cause more trouble than it is worth and will solve nothing, and because what they have seen as a problem is not something I have found particularly problematic. When I say 'stop' to a particular method of therapy, you need to stop or discuss with me why you think you should continue, but the decision should be left to me. I won't refuse to do things just because they are painful, but I will refuse to do things that don't work and that make things worse. I will let you know when you cross this line, although I may not always be able to be assertive about it. It is not okay to take advantage of my meekness." (That bit about stopping, it makes therapy sound like rape. I do not think this is an unfair comparison, though the extent of awfulness may differ greatly, though not always.)

Crazy Talk

2009-12-08T14:58:00.000-06:00

My decline in mental health has brought issues to the fore that I had been more or less successfully pushing to the margins for a long time. Let's not talk about those here (though I will henceforth refer to it as "the icky stuff"). Because of the icky stuff being raised by the decline, it makes me wonder if I should be going back for a bit of therapy. I hate therapy, I fight therapists, but I'm not sure how else to resolve the icky stuff. This is a very complicated proposition for me.

First, there is the decision of whether or not to do therapy at all. I will probably ask my dietitian and my psychiatrist for their input (not that I will necessarily do what they think I should). If I were to tell them about the icky stuff, I suspect they would suggest I go to therapy. (I am not keen to mention the icky stuff to them at all.) I do not like therapy. I expect to have to fight any therapist I would see, to a greater or lesser extent. I had wanted out of mental health care totally, and therapy is a high level of mental health care, in a way seeing my dietitian and psychiatrist isn't (there is much less for me to fight them about, less paternalism, fewer mind games, fewer lies). Even beyond just hating therapy, this isn't an easy decision to make: I can't just go to therapy every time I have a problem (okay, I can, and some people do, but I don't want to, and I think it is irresponsible to do so). I want to learn to solve my problems like a normal person. Some of the problems swirling are ones I suspect I can solve that way (figuring out what to do in terms of conservation education, finding an "in" to change mental health care), but I am less certain the icky stuff can so be solved, they are of a more neurotic sort, a sort normal people don't relate to very well.

Second, if I do decide to go to therapy, deciding where to go and who to see is no easier. The therapist I saw when I quit therapy has moved away, so I have to start from scratch. I went to a lecture at my alma mater on daseinsanalysis recently and told myself afterward that the next time I need therapy I would look for a daseinsanalyst. (The lecture was incredibly exciting; I might write about that later. Daseinsanalysis is an existential psychotherapy, but I'm not finding anything in a quick web search that describes it similarly as it was in the lecture.) Now that the prospect of going into therapy has come up, I realize that I don't have a good way of finding a daseinsanalyst and there is no guarantee there will be any near enough to me. I might ask the man who gave the lecture if he knows of other daseinsanalysts in the area, but I don't want to do therapy with him because some of that icky stuff is icky girly stuff and therapy for that with a man would make me uncomfortable. If I went to a dasiensanalyst, I suspect I wouldn't have to fight the therapist quite as much, which seems like a good thing since I would already be fighting my own demons.

On the other hand, I almost want to have to fight a therapist; it might be a good learning experience for the therapist, maybe then she would have a greater appreciation for what I mean when I criticize mental health care. Because, as they say, the devil you know is better than the devil you don't know, I've thought about going to someone who I met in hospital who is now in private practice (there are a bunch of them, mostly in two different groups, one of which my old therapist was in, the other of which my current dietitian is in). Even if they don't really remember me, my knowing them seems like it would make things a bit easier. (Also, I've sent them all copies of my thesis with letters of explanation in the past year.) Perhaps I could ask my dietitian and psychiatrist, both of who have worked with these people a lot, if they know who in this bunch would be open to me laying down some "jessa's not taking any crap from you" rules for the therapy. Alternatively, I could ask if they have any suggestions for therapists who would be amenable to rules like that outside of people I've met.

Talking to people about this is strange. I have talked to some mental health care professional-ish (former, future) people and when I say that a large obstacle in choosing a therapist is choosing how much I want to have to fight a therapist, they react as though having to fight a therapist is this uncommon and unfortunate thing. I'm pretty sure I would have to fight any therapist to some extent, though, even the ones that they've mentioned "aren't like that". I doubt myself so easily, so these reactions give me twinges of doubt; maybe I wouldn't have to fight any therapist, maybe it would be fine. But I've fought (or not fought but wanted/needed to) every professional whose care I have ever been under, so I'm reasonably confident that I would have to fight. When professionals whose care I am not under say that they would never act in the ways I fight or that their colleagues would never act in those ways, I'm skeptical. It is easy for them to say that when I don't have specific examples from encounters with them to bring up. It is weird. I don't want to be mean to them, especially if they are willing to talk to me, but I doubt that they are as open and flexible as they claim to be when I talk to them about my complaints. Almost every professional who has been willing to talk to me about my complaints has claimed to be as open and flexible as I request that professionals be. It seems impossible that every professional whose care I have been under has been inflexible in ways I've had to fight, while every professional who I meet "on the outside" is already doing everything I am asking the professionals to do. I don't believe that this is the case, rather, I suspect that the professionals I talk to on the outside are not making the connection between my critiques of the mental health care I've experienced and the mental health care that they deliver. Or something.

Crazy Pills

2009-12-04T15:17:00.001-06:00

I have been off psychotropic medication for the last month for the first time since I began taking it 7 years ago. I started tapering off my medications a year and a half ago. Even among people who agree that mental health care is seriously lacking, there is a big debate on the virtues of medication. Some people think it is folly not to take medication while some people vilify both the medication and those who choose to take it. My take on the matter is somewhere in-between.

I had been managing pretty well on medication for about a year before I decided to try coming off them. I didn't want to take medication my whole life if I didn't really need to just because I had never tried to come off. Medication has done some pretty wonderful stuff for me, but it does come with a price. Economically, I have to pay for the drugs and the psychiatrist appointments to get the prescriptions for them, which isn't cheap, even with insurance. Beyond that, I also have to carve out the time to see my psychiatrist and go to the pharmacy. But, of course, the side effects of the medications are the cost that loom largest. The medications that worked for me (venlafaxine/effexor, escitalopram/lexapro) exacerbated my orthostatic hypotension, gave me head lightening when I was late for a dose, and made me very very sleepy. I was okay with the idea that I might find I needed the medication to keep the depression and anxiety at bay, since I would much rather take the pills than live through that hell, but I didn't want to continue to pay the price of taking the medication unnecessarily.

When I started tapering down, I was on venlafaxine/effexor, escitalopram/lexapro, and buspirone/buspar. I tapered off buspirone first, that being a pill that seemed to do nothing for me, because I was still in school and didn't want to jeopardize my schooling. It went very quickly and painlessly; I had no withdrawal symptoms.

I tapered off venlafaxine next. Venlafaxine was the pill most strongly correlated with fencing off the depression and anxiety, but I also had the most side effects from it, was conflicted about it being non-vegetarian, and was on twice the recommended maximum dose. Tapering off venlafaxine went very slowly and I had a lot of physical withdrawal symptoms. It wasn't until I finally got down to zero that I experienced any emotional withdrawal effects. I became melancholy. The melancholy itself wasn't really that bad, but it terrified me because I was afraid I would descend right back to hell. I was very scared and nearly went back on the venlafaxine, but the melancholy abated after a few weeks.

Last was escitalopram. I wasn't really sure how much this one had been helpful in abating my depression (though now I give it more credit). I half expected coming off escitalopram to be like coming off buspirone had been. It was rockier, I did have physical withdrawal effects, a lot of lightheadedness, but it wasn't nearly as bad as venlafaxine. When I got down to zero, there was a lot of crap happening in my life. None of it was anything super super major, but all of it was stuff that would have been upsetting individually, piled together (my alma mater is having a crisis of trust in the president and board of trustees, I made a complaint to the dean about my chemistry professor that was handled incredibly poorly, I hit a tipping point after 10 years of knee problems and had to see a doctor and start physical therapy, my car broke down). I was feeling melancholy in my new drug free status, but I wanted to stick it out to find out how much of that melancholy was situational and how much was really drug-free related. This time, for reasons I don't really understand, the melancholy didn't scare me as much. Some of those life situations are calming down and some are still raging, but after a bit of melancholy, my mental health seems to be taking a nosedive. I'm descending faster than I even thought possible. At the moment, I seem to have plateaued, and I am nowhere near the depths I lived in for so long, but I suspect I might have to go back on some level of medication.

I hadn't realized how attached I had gotten to the idea of being drug-free until I thought I might need to go back on some medication. Having an actual remission of crazy is obviously preferable to just having drugs fencing off the crazy. Looking forward to being able to withdraw totally from being in mental health care was exciting, and I think this is what fuels most of my disappointment. I'm having to deal with all those crappy situations, my decline in mental health, and mourning the loss of freedom from mental health care right now.

suffering doesn't mean you are crazy

2009-10-19T15:01:00.002-05:00

I don't want to dismiss or minimize anyone's suffering, but I don't like it when people call their suffering "Major Depression" or "Anxiety Disorder" when it isn't. Because I am vocal on the latter, sometimes people think I do want to deny or minimize other people's suffering.

It sucks to have your suffering minimized or dismissed. It's happened to me more than once that I have been miserable and people have dismissed it as not a big deal. I've been told to pull myself up by my bootstraps; I've been told that I just had a bad case of the growing ups; I've been told lots of insulting things. Telling me those things never made the suffering any less real or any less awful. You don't have to have Major Depression or an anxiety disorder to suffer. Suffering comes in lots of types and intensity, and just because someone doesn't have Major Depression doesn't mean they aren't suffering or that they are suffering any less. They are just suffering differently. (Okay, maybe there are a few people whose suffering I do want to minimize or dismiss, but they are a special case. These would be the people who feel they are entitled to a blissful existence without a blip of unhappiness.)

Still, it really steams me when people who do not have Major Depression (which I am using here only as an example, any other diagnosis could be substituted) are diagnosed with it or fish around for a diagnosis.

I do not like it when people do this as a way to one-up each other in terms of "proving" their suffering. I may disagree with the concept of diagnosis, but I recognize that diagnoses exist for a reason and this abuses the concept of diagnosis.
I do not like it when people are diagnosed with Major Depression, whether they asked for it or not, when they unambiguously do not fit the criteria. This also does violence to the concept of diagnosis. Major Depression is a tricky thing to study because (as I understand it) the studies done on it must operate under the assumption that Major Depression is a discrete thing, that all people with Major Depression have something, other than their symptoms and the "Major Depression" label, in common, even though we haven't identified it yet. I am not convinced of this assumption, but even so, adding more people to the mix, people who do not even fit the criteria, only confound the already questionable studies of Major Depression. Labeling extra people with Major Depression will water down the diagnosis (which I think is already watered down) and give both professionals and lay people a distorted understanding of Major Depression.
I do not like that the diagnostic criteria for Major Depression is so wide as to include many normal life situations. Diagnoses are meant to identify pathology. Sometimes, people are sad. This is normal and healthy (and I know that "normal" does not equal "healthy") in many circumstances. The only life circumstance that the criteria specifically say to make sure you don't mistake for depression is bereavement, but people can be sad for longer than two weeks for other reasons and still not have a mental illness.
I do not like it when people take labels of mental illness lightly. Mental illness is serious and having a label of mental illness has serious consequences. No, I do not think mental illness is something to be ashamed of or stigmatized. I'm not saying that I think it is inappropriate to joke about mental illness. But mental illness is not cool. If you do not have a mental illness, it is probably a bad idea to get yourself labeled with one (it can still be a bad idea to get labeled with mental illness even when it is legitimate). Many people have used the insanity plea to get out of jail sentences and regretted it when they succeeded. While most people will not spend years in forensic wards of a mental hospitals because they got themselves labeled with a mental illness they didn't have, they still may face unpleasant consequences as a result.

When people suffer, are not mentally ill, but are labeled with a mental illness, I am not going to deny their suffering. Even though they are not mentally ill, their suffering is still real. But I am not going to say it is okay for them to call it mental illness and I do not believe that denying that they are mentally ill equates to denying that they are suffering.

If you don't tell us, we don't know

2009-09-08T15:01:00.000-05:00

I've kind of made a lot of accusations of mental health care professionals. I say kind of because, when I'm being diligent and conscientious, I leave an out. That out usually comes in the form of admitting that maybe I only think the professionals are acting cruelly because I am missing information. I don't have that information that might make me aware of professionals' good intentions because, as a patient, they don't tell me.

Some of the time when I am tempted to assume that the professionals have malicious motives, I have been able to think up reasons for why they might do exactly the same thing with benign motives, sometimes I didn't think of benign motives until later, sometimes I never thought of benign motives, but I have always been able to think up malicious motives. Malicious motives are easy to think up because so many of them are easy to apply to any situation: the professionals did that because they are jerks, because they want to confuse me, because they want to frustrate me, because they are drunk with power. Benign motives can be more difficult to think up because they seem to require being specific to the situation more often: they told me happy lies because they want to give me hope (even though it didn't work), they crushed my chest while restraining me because they want to keep me safe, etc.

This happened a lot in my experience of mental health care. When professionals taught me communication skills and then weren't receptive to me when I tried to use those very communication skills, I was tempted to assume they were just jerk hypocrites. The benign motive might have been that they were busy and forgot to follow up with me, that they simply didn't hear me, that they were still in the process of finding me an answer, or something entirely different. When I was at one hospital that said I should handle my impulses to self-injure by snapping a rubber band on my wrist and I went to another hospital that absolutely prohibited snapping a rubber band to control impulses to self-injure, I was tempted to conclude that both hospitals were full of crap and made up arbitrary rules. The truth might have been that both tactics are comparably effective, but that only one tactic can be used at a time and the two hospitals happen to have chosen different tactics.

My point here is that, no matter what a mental health care professional's reason is for doing these things, it is experienced by the patient in the same way. The patient will experience those happy hopeful lies the same way whether the professional is telling them with the goal of fostering hope or with the goal of eventual disappointment. Keeping this in mind, there are a lot of things to be paranoid about in mental health care. For professionals, it might not seem that way because they know what is going on and what their motivations are and that they are not telling lies with the goal of eventual disappointment. Patients, however, do not know what is going on behind the scenes, they do not know whether the professionals have good intentions; they only know that the professionals are doing frustrating or confusing things and that the professionals refuse to talk to them about that (and it is a pretty common assumption that they wouldn't hide it unless it was nefarious). Mental health care professionals sometimes end up suffering, too, with low morale from the unpleasantness of being hated by their patients.

There is a way for mental health care professionals to avoid most of this: to avoid letting patients assume that they have malicious motives, to avoid much of the paranoia patients have because of this, to avoid patients hating professionals on the basis of these untrue assumptions, to avoid the drudge of working with patients who hate you. EXPLAIN THINGS! Explain these things to patients who ask you, who directly challenge you about these things. Explain things to patients who might not be asking these things when it won't hurt anything to do so (because they still might be making assumptions and getting frustrated). There were only a couple of situations like this where thing were explained to me after I was frustrated and had made the assumption of maliciousness, and in those situations I was instantly calmed by the explanation. That won't happen every time, but it definitely won't happen if you don't bother to explain your benign motives.

I'm pretty sure that explaining things is a good idea. It's win-win. Patients get less frustration; professionals get a more pleasant work environment. I don't see any reason not to explain things. Unless you really do have something to hide...

I CHOSE ANOREXIA

2009-08-28T13:02:00.000-05:00

I feel like shouting that from the rooftops. I CHOSE ANOREXIA. I knew what I was doing.

I was 17, driving South on County Farm Road, maybe to the ice rink or maybe to church. It was February or March. I was depressed, I had been depressed since I was 14 and it was driving me crazy. When I was 14 I needed a way to explain the depression to myself so I decided it was my punishment for being an awful horrible person. I had to convince myself that I was an awful horrible person and I did. By the time I was 17 I was desperate for relief; my depression was explained, which helped, but I was still going crazy from it. I thought the same things all the time, "I'm so depressed, it's because I'm so awful, I'm being punished, I need to be less awful." I became a perfectionist, I freaked out every time I fell on a jump while skating, every time I got a less than perfect score in school, every time I had a less than charitable thought. But I couldn't really become any less awful. There was kind of room for improvement, I could have given the right answer on the test or I could have landed the jump. On a literal level, I could have been doing better, but on a practical level, I couldn't. On a practical level, I was already doing phenomenally well at all of these things for someone who was losing her mind.

That day, when I was driving South, I thought about anorexia. I figured it would be easy, I was already fairly slim, enough that people had asked before if I was anorexic. I figured it would give me some new things to obsess about: I could think about food, calories, and the not eating of them. It would give me something less circular to think about; I could make a goal and reach it. It didn't matter so much to me what that goal was as long as it gave me a linear process instead of my circular, repetitive thoughts. It gave me a way to punish myself for not being perfect and a new way to become perfect.

I knew what I was getting myself into. I had seen the after-school specials, read the textbook in health class. I knew I was going to become a new kind of crazy. I knew that I would be obsessing over body image, which I never had before. But that new kind of crazy was part of the plan. Anything sounded better than the old kind of crazy. I weighed the pros and cons, but it was a pretty straightforward decision to me, since even the cons sounded so much better than my current life at the time. I chose anorexia.

But according to the professionals, no one chooses anorexia. I'm not sure why they like to say that so much. Maybe it is because they want to think of their patients as victims. Maybe because it helps people feel more charitable toward anorexics. I don't doubt that a lot of people become anorexic by accident. They go on a diet for whatever reason and they go too far and it becomes an obsession. They chose to diet but they didn't choose to become anorexic. That happens. But that isn't always how anorexia starts.

There are a lot of stereotypes about anorexia. It afflicts teenagers, girls, Caucasians, the middle and upper classes, perfectionists, smart people, etc. The professionals acknowledge these things, know that even if these populations are overrepresented among anorexics, but they also know that not every anorexic fits within these stereotypes (well, mostly). But I have heard a lot of professionals say that no one chooses anorexia and I have never heard anyone but myself say otherwise. Maybe I am the only person in the whole world that ever chose anorexia and these people just don't know about me. But I doubt that. Even if that was the case, why do professionals seem so confident in making that statement? So often, professionals tell their patients that everyone is different, everyone's anorexia is different, and every recovery is different, but then they say, "no one chooses anorexia," they think everyone is the same in that way. This attitude is so ubiquitous, I want to shout from the rooftops, "I CHOSE ANOREXIA," tell them they are wrong.

There are lots of generalizations like this made by mental health care professionals, who should know better. This is just one of them. But every generalization like this is impacting some patient somewhere in a negative way. When I had an intake interview for a treatment program, they asked how my eating disorder started and I told them. They refused to believe me, asked where I had heard of anorexia (Seriously? You expect me to remember? that is like asking me when I first learned what the word "the" meant.), asked if I had been teased, asked if someone suggested I go on a diet. That disbelief haunted my treatment. The professionals were so certain that I was hiding something, that something else had thrown me into anorexia, and they kept hounding me to talk about that thing, which didn't exist, so they neglected helping me with some of the things that did exist.

How do suicidal people talk about suicide?

2009-08-13T16:03:00.004-05:00

Something that I have heard relatively frequently is that people who really want to commit suicide won't tell anyone about it and that anyone who tells another person about their desire to commit suicide doesn't really mean it. I guess this sounds good and maybe it even sounds like it makes some sense, but, to me, this doesn't make sense and basically amounts to blaming the victim, who is suicidal and probably already suffering enough.

(Note: I don't doubt that some people would tell someone of their plans to commit suicide because they are ambivalent about it or want that person to talk them out of it. It is the assumption that everyone who tells someone about their plans to commit suicide is ambivalent that I take issue with. I also don't doubt that there are people who talk about their desire to commit suicide who do so in a manipulative way to get attention, but I take issue with assumption that everyone who talks about their desire to commit suicide is doing so in a manipulative way.)

Obviously it is going to be easier to commit suicide if you don't tell anyone because you won't run the risk of being locked-up. I'm guessing that fact is the primary basis for this misconception. But what about other situations? If I want to rob a bank, this logic says that if I really intend to rob that bank, I won't tell anyone because that might compromise my ability to actually rob that bank. I've never heard anyone question the potential robber's intent to rob a bank on the basis that he told someone about it in advance. We explain this by saying that the potential robber was stupid or that he misjudged his confidant or something else. Why does this "if you tell someone about your plan than you must not really mean it" logic apply to suicide but nothing else?

So why might someone who is genuinely suicidal, someone who genuinely believes that suicide is there best option and has no ambivalence about going through with it, tell someone else about this even though that might prevent them from committing suicide?

They might want to soften the blow to their loved ones. Even though the suicidal person knows that they will cause their loved one's grief, they might try to mitigate that by warning them, explaining the deep extent of their suffering, or telling them that it isn't their fault.
Many people, generally, alleviate stress by talking about things. If the suicide is not immediate, the suicidal person may talk about his plan in order to alleviate stress between then and the time of their planned suicide.
The suicidal person may confide in someone about their plans, someone who they think will be understanding and sympathetic to his situation, yet who will not try to get him hospitalized. The suicidal person may be wrong about their chosen confidant.
I'm sure there are as many different reason for this as there are people who have done it.

I have also frequently heard people who tell someone else about their intent to commit suicide said to be "playing a game." The first time I heard this I was already in the hospital and I was brusquely told, "this is not a place for playing games." I was very confused. I understood that "playing a game" meant being manipulative by doing things like saying I am suicidal just to get sympathy or attention. But I wasn't playing that game; I was genuinely seriously considering the merits of suicide. (Additionally, if you are going to lock up everyone who says they are suicidal while assuming that anyone who says they are suicidal is "playing a game," how can you say the hospital is not a place for playing games? The hospital is the place for playing games because you have just rounded up all of the game players.) The idea that all patients who say they are suicidal do so in order to manipulate people is just plain mean.

Even if a suicidal person is telling someone else about it because they are ambivalent about suicide, what is wrong with that? Isn't that precisely the best thing for them to be doing, if you believe all suicides should be prevented? How is it manipulative to say, "I'm considering suicide because my life is super awful for reasons for x, y, and z. Right now, that is looking like my best option for relieving my suffering, but if there were a way to relieve my suffering without dying, if there were a way to enjoy life again, I would consider it"? Most people who are actively considering suicide are not able to express their desire for help in such a level-headed way, but that doesn't mean that they are manipulative when they express their desire for help in a mixed-up desperate way. I think that mixed-up, desperate people often get interpreted as being manipulative because they are changing their minds so much that, even though they are being sincere, they seem duplicitous because most of the time when people contradict themselves like this, they are lying. (Reading my old journals from when I was depressed is embarrassing because I changed my mind so many times and thought I found the secrets to the universe so many times. There are a lot of things I did during that time that were extremely ill-advised and may have come off as rude or contradictory or grossly inappropriate, but I did all of those things completely sincerely. This was a product of adolescence, but also a product of being out of my mind desperate for an end to my depression and anxiety.)

I can understand that it might be very frustrating to work with people who are constantly contradicting themselves and changing their minds. I can understand that it might be hard to distinguish who is doing this sincerely and who is doing this because they cannot keep their lies straight. I can understand the temptation to paint them with a broad brush as all being manipulative liars because they are all equally frustrating. I can understand the difficulty of distinguishing these two groups from each other and the high stakes for mixing up the two groups. I cannot understand the refusal to acknowledge, or the simple lack of acknowledgment, that some of these people are being genuine, not manipulative, but are having such a hard time within themselves that they contradict themselves and change their minds incessantly. I cannot understand not trying to distinguish those who are sincere from those who are manipulative and instead treating them all equally brusquely as people who are manipulative.

This post is partially a response to a comment on Bruce's post "Christianity and Mental Illness Part Three".

Overcertainty

2009-06-19T14:24:00.003-05:00

I've been reading Jerome Bruner's Actual Minds, Possible Worlds (1986). I'm reading it primarily for my essay on recovery from eating disorders, as research on how reality gets translated into the stories that we tell about reality. In this book, Bruner mentions a study by Carol Feldman that examined the difference in how teachers speak to their students and how they speak to their colleagues. By measuring the frequency that teachers used words that indicate uncertainty (i.e. might, should, etc.) with their students and with their colleagues, Feldman found that teachers presented their students with a "far more settled, far less hypothetical, far less negotiary world than the one they were offering to their colleagues" (Bruner, 126).

I've been wondering for a long time how mental health care professionals, people who genuinely want to help their patients, can hurt them so much. I think that part of the explanation is a sort of blindness among professionals. I posited in my undergraduate thesis that part of this might come from goal displacement. (In goal displacement a goal is defined and a procedure is established with the aim of accomplishing that goal. Later the procedure becomes the de facto goal. Sometimes this means that the original goal is subverted because the procedure has become inflexible and cannot allow for special circumstances by examining whether or not the procedure will be able to accomplish the original goal.) After reading this discussion by Bruner, I wonder if this professional blindness also comes from an education that presents our knowledge of mental health and mental health care as being more settled than it actually is.

While it is appropriate to present the world as very certain and settled to elementary school children, I think this is entirely inappropriate at the college level. At Shimer College, the world definitely came across as being very uncertain, but I know that many colleges present the world as being very certain and settled. I wish it were reasonable to assume that all college students should already understand that the world is not as certain as high school history textbooks present it, but I know better than that. Taking those two factors into account, I can see how people might graduate college, even earn a graduate degree and go on to practice as a mental health care professional, still believing that everything they were told in their psychology classes is hard fact. I have had some very confusing interactions with professionals that this would explain very well.

I'm imagining it like this: A student goes through school and graduates high school never having been told or having considered on her own that things aren't as straightforward as textbooks and teachers have presented to her. She goes to college and majors in psychology. In her classes things are still presented as being very certain; she is comfortable with this and accepts it at face value. She graduates still thinking everything she has been taught has been determined quite certainly. She goes to graduate school and still accepts things that way. She gets a job in mental health care and interacts with patients based on this certainty. When patients doubt the science behind psychotropic medication, she dismisses them. When patients explain the genesis of their illnesses and this doesn't fit in with any of the schema she was taught, she dismisses them. When patients express any of the questions of the sort that she neglected to consider as a student, she dismisses them. Perhaps she goes on to teach the next generation of mental health care professionals. Because she never questioned the certainty of our knowledge of mental health and mental health care, she cannot encourage her students to do so and she cannot engage in discussion with her students even when they do question this certainty.

I understand presenting things as though they are straightforward in college classes. I would call this a shortcut. It would be very inconvenient and cumbersome so have to qualify everything you say in a lecture with, "this is just a theory and there may be other valid explanations." If you had a class full of students that you knew were able to fill in those qualifications without your making them explicit, it would be marginally okay not to make it explicit, but it would still be better to remind them occasionally of the uncertainty and explore with them some of the other possible explanations. If you don't bother to make the uncertainty explicit in a class where not every student is reliably able to keep that uncertainty in mind, you are doing those students and their future patients a serious disservice.

I imagine that in a lot of professions, things are presented as being very straightforward in school, but when the students begin their careers or go on internships, their experience reliably teaches them that things are not as certain as they appeared in school. I still think this uncertainty and plausible alternatives should be addressed in school, but in this case that is not as critical. In the mental health care profession, some of the illusions of certainty may be dissolved once a student begins practicing, but many may still remain. Patients like me may directly challenge a professional's, or intern's, certainty by asking pointed questions or patients may challenge a professional's certainty indirectly by simply being different and having a different experience of mental illness than the professional was taught about. However, since these are patients challenging the certainty of the professionals and interns, that challenge is more likely to be dismissed, rather than seriously considered like it should be, than if the challenges came from someone else.

And just so it doesn't look like I am presenting things more straightforwardly than they actually are: I don't think this is a problem for every mental health care professional. I'm not even certain about any of this. But, based on what I have experienced in my interactions with mental health care professionals, this is a plausible explanation for the problems I have encountered.

psychiatric diagnosis is a cognitive shortcut

2009-05-28T11:54:00.003-05:00

One of the "cons" of psychiatric diagnosis is that people forget they are using them as cognitive shortcuts. One way this happens is that the professionals take stock of a patient's symptoms, determine a diagnosis for the patient, and then use that diagnosis to communicate about the patient rather than using the original symptoms. I'm skeptical about the potential utility of this, but I do understand the use of cognitive shortcuts: we all use them and our brains would probably explode if we didn't. However, I think this is an area that warrants more conscientiousness than the use of diagnosis is able to provide. Yes, even referring to symptoms is a cognitive shortcut--putting things into language at all is a shortcut--but it is less of a shortcut and would rid mental health care of at least some of the problems that arise from speaking in terms of diagnosis.

Part of the problem in using diagnoses, rather than symptoms, to talk about patients' experiences is translational. Patients tell professionals their symptoms in their own words (i.e. "I can't have fun. I do things that used to be fun, but I just get bored."), the professionals translate that into their clinical way of describing symptoms (i.e. "markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day" - DSM-IV, Major Depressive Disorder ), then the professionals translate those symptoms into a diagnosis (i.e. Major Depressive Disorder). When it comes time to educate patients about their illnesses and engage them in treatment, the professionals have to translate those diagnoses back into symptoms; sometimes they express them in the vernaculars that the patients use and sometimes the professionals express them in their clinical language or in a vernacular foreign to the patient. This is like translating from English (patient symptom language) to Spanish (professional/clinical symptom language) to Swedish (diagnosis language), then back to Spanish, and maybe back to English, but maybe to an English with different idioms and slang (i.e. British English instead of American English). This leaves a lot of room for error, where things can't be translated very well because of the mismatch in vocabularies, and this leaves a lot of room for misunderstanding.

Another problem created by using diagnoses as a cognitive shortcut to understanding and communicating about patients is that there is a loss of specificity. Of course when one person reports something, anything, to another person, the second person will know much less about that topic than the first person; this phenomenon is not limited to mental health care. However, when the patient's report to the professional is translated to the clinical language of describing symptoms, more specificity is lost. When the clinical version of the patient's symptoms are translated into a diagnosis, a lot more specificity is lost. This can, and has, lead to an anorexic being treated for and repeatedly asked about her purging. This anorexic, me, never purged to begin with. Purging is not a necessary symptom for diagnosing Anorexia Nervosa, but it is a possible symptom. After I was diagnosed, however, all of the symptoms of Anorexia Nervosa were imputed on me by the professionals, whether or not I actually had them. When I was discharged from the hospital, my papers declared that I was not purging, which, while true, was irrelevant. Because the criteria for diagnosing mental illnesses often say things like, "Five (or more) of the following symptoms have been present," (DSM-IV, Major Depressive Disorder) someone can be diagnosed with an illness, yet not have all of the symptoms listed in the diagnostic criteria for that illness. This seems obvious, but it means that when someone is diagnosed with Anorexia Nervosa, for which purging is one of the possible diagnostic symptoms, the diagnosis of Anorexia Nervosa noes not imply that any particular patient necessarily purges. It is simple syllogistic logic--some anorexics purge, jessa is anorexic, therefore we still don't know whether or not jessa purges--but this logic isn't making its way to all the mental health care professionals on a level that will prevent them from making unwarranted assumptions like this.

Diagnosis also allows for extra layers of stereotypes. A professional can stereotype a patient without diagnosis--on the basis of their race, gender, symptoms, clothing, etc. However, clinical descriptions of symptoms and diagnoses give the professionals an extra basis for stereotyping their patients. The general public has stereotypes for various mental illnesses and I am confident that professionals do, too. Many of those stereotypes are derogatory, like the assumption that depressed people are just whiners. The negative consequences of derogatory stereotypes are probably obvious, but in the context of mental health care they can be more damaging than usual. Stereotypes don't have to be derogatory or even negative at all. There are lots of things that are "known" about Anorexia Nervosa that don't enter into the diagnostic criteria at all. Anorexics tend to be rich, white, teenagers, perfectionists, smart, driven, etc. None of those are part of the definition, the diagnostic criteria, of Anorexia Nervosa, but they tend to be imputed on patients as though they are part of the definition. These things that we "know" about anorexics may be things that tend to be common among anorexics. It is fine to recognize these trends, but when they become assumptions about individual patients, that is when they become problematic--professionals start insisting that patients work on particular issues in treatment that may or may not actually have any relevance for any particular patient.

Pros and Cons of Psychiatric Diagnosis

2009-05-21T15:10:00.002-05:00

I happen to think that the use of psychiatric diagnosis does more harm than good. I'll tell you why. Please tell me what you think I've missed.

Pros

Psychiatric diagnosis provides a framework within which to understand mental illness.
By noticing which symptoms seem to show up together, then noticing which cluster of symptoms a particular patient seems to fall into, treatment decisions can be informed by what has or has not worked for other patients with similar clusters of symptoms.
Diagnoses can serve as a sort of cognitive shortcut. Rather than list all of a patient's symptoms individually, professionals can name the cluster and understand the patient more quickly, speeding communication.
When patients are given diagnoses, it can validate their experiences by letting them know that others have had similar experiences.

Cons

When the incomplete and tentative nature of the framework for understanding provided by psychiatric diagnosis is not acknowledged or is forgotten, it is used rigidly and inappropriately. I think this is probably a good part of the cause of the other problems diagnosis can cause.
Experience with patients having those clusters of symptoms, known as diagnoses, can appropriately be used to inform treatment, however, this tends to be used to dictate treatment.
As a cognitive shortcut, diagnosis would be useful only if people were mindful of the fact that they are using it as a cognitive shortcut. When people lose that mindfulness, diagnosis becomes a stereotype.
When diagnoses are overused, this harms those patients who validly fit the diagnosis. Services are taken up by people who don't need them as badly. The people who are inappropriately diagnosed give the diagnosis, and those who are appropriately diagnosed, a bad name and additional stigma in the eyes of the public (i.e. "depressives are just whiners.").
The rampant co-morbidity of diagnoses makes the framework lose its usefulness as a tool for simplifying and may even make mental illness seem much more complex.

I think that psychiatric diagnosis has some potential to be useful and beneficial. However, I think that the way they are presently used negates and actively prevents the potential usefulness they have. I also don't think the potential benefits are worth all the energy that goes into creating and maintaining this framework of diagnoses, nor do I think that the benefits are worth even the risk of them being used as inappropriately as they are.

I would rather see symptom-based treatment. Symptoms could be used to identify what needs treatment for each patient rather than diagnoses. Patients would list the symptoms that bother them and receive treatment for those and their underlying causes. There would be no misdiagnosis. No one would be treated for symptoms they don't have, because there would be no reason to assume that a cluster of symptoms has to go together. Even when patients have symptoms that do tend to go together, but one doesn't bother them, professionals won't have to feel compelled to treat that irrelevant symptom in the interest of treating the "full illness".

I know insurance-wise this may create practical problems, but I see the GAF score as the only thing they really need to know in terms of approving benefits; anything else is just the insurance companies meddling. I have no problem with GAF scores; I think they do a much better job than diagnoses. I wish that GAF scores were given more attention than diagnoses.

I am a moderate on mental health care

2009-05-11T15:46:00.003-05:00

I do not like the way mental health care is currently done. Because I criticize it, however, people sometimes want to lump me in with antipsychiatry and sometimes with the Scientologists. I read things by people who are virulently antipsychiatry and I do gain some semblance of comfort from it because it shows me that not everyone has been brainwashed into thinking mainstream mental health care is a good idea. However, I do have some of the same problems with antipsychiatry and other people who oppose mainstream mental health care as I do with mainstream mental health care itself.

I recently read an article by Ty Colbert in which he focuses on the shortsightedness of NAMI. He writes about how NAMI is comprised of parents who come together for support in caring for their mentally ill children, but how they are so invested in mainstream mental health care that they are blinded to alternative solutions and cures for their children's problems and illnesses. That is pretty much how I view NAMI . However, I do not agree with the alternative that Colbert proposes in his article--to focus exclusively on biographical issues as the cause of mental illness--any more than I agree with focusing exclusively on biochemical causes as NAMI does. I appreciate that Colbert wants to open up the discussion to include biographical causes, but I disagree with making it exclusive to biographical causes.

I haven't actually experienced mental health care that was either completely focused on biochemical causes or biographical causes, but rather, most of the mental health care has been focused exclusively on both. That might sound kind of confusing or dumb, and it is. In a lot of different mental health care settings I have had professionals try to absolve me of guilt for my mental illness by telling me that it wasn't my fault, it was just that my brain chemicals were messed up and, later, insist that there must have been some event or something that set off my depression.

There are a lot of different positions one can take between the "all therapy" approach and the "all drugs" approach and I don't expect consistency between mental health care settings, even though it is very confusing as a patient. Within a single setting, such as one unit in a psychiatric hospital, I would hope for consistency, but I can see how that would be difficult to manage, even though the lack of consistency is confusing to patients. However, I have experienced this lack of consistency even from individual mental health care professionals, which is a kind of confusing that I cannot understand and it is at this point that I begin to call this "dumb".

It isn't that I can't comprehend holding the theories of mental illness as biographically caused and as biochemically caused in tension, it is the way they they use these theories as interchangeable, each to be used whenever it is most convenient, that I don't understand. It is like how my brother calls me either his "big sister" (because I am older than him) or his "little sister" (because I am smaller than him); whichever is convenient to his argument at the moment. There is either a lack of integrity or a lack of thought going on here that is so extreme as to be incomprehensible to me. (I know that I very well may be doing the same thing in some other area such that it is incomprehensible to others, but that doesn't mean I'm not validly recognizing this here.)

There are also people who just don't believe that mental illness even exists. Some people think mental illness is largely a way to label and manage people who act in ways contrary to the cultural norm. Again, I do appreciate that people like this are opening up the discussion to the possibility that what is called "mental illness" might be better called "a little different from the rest of us", but I don't agree that this is a full explanation of the phenomenon of mental illness (or "mental illness") anymore than I think biographical or biochemical theories fully explain mental illness. I do agree that sometimes things are called mental illness when they shouldn't be, sometimes on an extreme level (drapetomania was the mental illness that caused slaves to run away, until slavery was no longer socially acceptable) and sometimes on a more subtle level (the fact that I refuse to do affirmations has always be assumed to be a symptom of my depression, though it isn't). I do not believe that all mental illness is just being different in socially unacceptable ways, but I do believe that sometimes it is and that once someone is labeled "mentally ill" many more of their socially unacceptable differences are treated as pathology than if they were not labeled as "mentally ill". If I was not mentally ill, I doubt anyone would care that I refuse to do affirmation or consider that indicative of mental illness, but because I have been labeled "mentally ill", my refusal to do affirmations is treated as a symptom of my mental illness.

I read a fictional story by Kevin Brockmeier that included the sentence, "People who read Tolstoy find it difficult to be alive because they are reasonable, while people who read Dostoyevsky find it difficult to be alive because they are not." I read both Tolstoy and Dostoyevsky. I know that part of why I found it difficult to be alive was because I was unreasonable in some ways, but part of the reason I found mental health care to be so intolerable was because I was still reasonable in other ways. My depression caused me to be unreasonable (or however you want to explain the link between depression and unreasonableness). However, I was still reasonable enough to know that it didn't make sense to explain mental illness as exclusively caused biographically, biochemically, or, paradoxically, exclusively both, and I was still reasonable enough to understand that a lot of other things about mental health care are also unreasonable.

Validation, part 3

2009-03-31T14:28:00.002-05:00

Here I'm expanding on what I mentioned about the consequences of telling lie to patients before (here and here).

When a patient is paranoid, delusional, or hallucinating, part of the role of mental health care is to introduce the patient to reality. The invalidating aspects of mental health care can create problems in this area.

There are a lot of lies that get told in mental health care. When I've talked to some professionals, they deny telling lies and act horrified that I would say this. I'm not sure if these people genuinely don't tell lies (I have been mostly talking to the "cream of the crop") and genuinely don't see their colleagues telling lies. Perhaps they actually believe some of these lies (I suspect they do) and perhaps they think that some of these lies are innocent and protective. Perhaps (as the most nefarious of possibilities) they don't care not to lie because they figure that mental health care patients won't know the difference anyway.

Lying to patients doesn't only include intentional outright lies. It includes dismissing or confirming a patient's belief without stopping to reconsider your own bias on the subject. If a patient accuses one of your colleagues of something and you dismiss this instantly because it sounds out of character for your colleague, you may be inadvertently lying to your patient. If you have literally misunderstood a situation and you pass on your misunderstanding to your patient, you are lying to your patient. I know it would be hard to know when you have misunderstood something, but, just as self-awareness can greatly benefit patients, self-awareness of the fact that you can misunderstand situations and awareness of your own biases can go a long way for staff, too. I think you have to be more careful with confirming or denying the reality of things with your patients than you have to be with yourself. Unfortunately, the trend seems to be for professionals to be less careful with this for their patients than for themselves.

Part of introducing someone to reality is helping them discern which parts of their experience are real and which are imagined. If you lie to patients, this gets in the way of helping them meet reality. Those patients are still relying on you to introduce them to reality; they won't be able to tell when you are lying to them and when you aren't. When you tell them which things are and are not real, they are going to be looking for trends so that they will eventually be able to discern those things themselves. It is entirely reasonable to reject the things that patients say when they are wrong or off-base; that will help them meet reality. But if you lie to them about what is true, your lies may skew the trends they will use to build their own tools for discerning reality.

This wouldn't be as bad if patients who needed help discerning reality were going to rely on you for this forever; you would have complete control over what they determine to be reality. It is still cruel to manipulate their perception of reality, but the consequences might not get out of control. However, patients won't and can't rely on you forever, so lying to them sets a precedent. They will incorporate that lie into their attempts to create their own system for discerning truth from paranoia, delusions, or hallucinations. If you have lied to patients, they might end up identifying the wrong trends to help them separate truth from fiction. This means that, going forward, they are still mistaking a lot of truth for fiction and a lot of fiction for truth. Despite all this work, they will still have a cripplingly flawed reality-detector.

Not all patients are so out of touch with reality that they will need to devise an entire new system for recognizing reality. This is the kind of patient I have usually been. Still, as a patient, I have known that my perception of reality wasn't entirely accurate. I did know that most of my shortcomings in perceiving reality concerned the reality of myself. This meant that when I was lied to about the rules of the unit or social norms outside the hospital, I knew I was being lied to and it was frustrating, but it didn't change my perception of the reality of those things. However, when I was lied to about myself, when I was told I was manipulative and Borderline Personality Disordered, this really made me question my perceptions of myself. When I reflected on myself and my actions and was honestly unable to find Borderline-like-ness in myself, I was very confused and thought I must be in denial. I knew that I wasn't the best judge of myself, but I really didn't see myself fitting this diagnosis. Eventually, I managed to convince myself that I really was Borderline Personality Disordered by contriving past situations to fit with BPD. Later, I mentioned to a therapist that my Borderline-ness was something I wanted to change about myself, but that progressed by her returning me to the reality that I was never Borderline Personality Disordered to begin with. Even though this is not as extreme of a flawed-reality detector as a patient who comes into mental health care further removed from reality might end up with, it is definitely not helpful to one's mental health and is an example of a patient being worse off on account of mental health care.

Bitterness

2009-03-19T08:46:00.003-05:00

There are a lot of things in mental health care that I am very bitter about. However, that does not mean that I am not also grateful for what mental health care did to help bring me where I am today. I tend to express my bitterness a lot more than my gratitude. In general, that seems to be a trend among most people. For me, in the context of mental health care, there are a lot of reasons for this:

Just like for everyone else, it is easier to complain than to be thankful.
Mental health care actually did make me more depressed at times, such as in crisis stabilization.
The ways in which mental health care has helped me have all been very gradual and slow acting. Although many of the things about mental health care that I hate are also gradual and slow like that, there have also been quick and easy to identify parts. This means it is easier to see the bad parts than the good parts.
My bitterness about mental health care usually comes out more in flippant ways and in situations in which I am not really trying to be fair. When I think about the complexity of mental health care, I am not nearly as bitter. I express my bitterness more in situations where I am not interacting with professionals. When I sound especially bitter, it's probably more that I am being more one-sided about the issue; in those situations I'm not inserting qualifiers like "I know they are trying, but..." which are all that I can really do to express the fact that my bitterness is tempered.
I think that my bitterness actually serves a purpose in trying to help make mental health care better. It means that when the professionals tell me that things are hard to change, I won't just back down and say, "as long as you mean well, I guess it will be okay." Instead, I'm going to say something more like, "I understand that changing this will be difficult, but something needs to change because this has a negative effect on patients and gets in the way of providing mental health care; I will help you figure out how to make this happen as much as I can."
I love my life now, but I do not think my life now is worth what I went through. The level of enjoyment I experience now was not worth the level of suffering I experienced. I was constantly told that recovery would be worth it (though I think more in terms of remission rather than recovery), but I have not found that to be true. I would not do it again. Though a lot of this suffering was from my depression itself, a lot of it came from mental health care making my depression worse, from the frustrating and terrible parts of mental health care, and from their insistence that I continue through the suffering.

My thankfulness is for the fact that I have gotten to a point where I love my life now. That is short and simple statement, but that doesn't mean it isn't huge. However, like I mentioned above, though I really love my life now, I still don't think my life now is worth the suffering I went through. If I thought the wonderfulness of my present life was worth the suffering I went through, I might not seem so bitter.

Bits

2009-03-10T14:39:00.002-05:00

I have two posts up recently on Mental Nurse; the first about artificial language barriers that professionals erect between them and their patients, the second about charting.

Otherwise:

Working on revising the presentation I gave to the professionals in February. I will give it again in May to a different group at the same hospital. I had some thoughts about what to change right after I gave the presentation, and the woman who invited me also gave me some feedback and told me about things that came up in the discussion the professionals had after I left.
Working on my essay about recovery from eating disorders and why the story of recovery tends to not be told or to be told poorly.
Gearing up to work on a survival guide to mental health care with a couple other people from Mental Nurse.
Signing up for a bookbinding class in Pennsylvania in mid-June. The hardest part will be getting there, as it seems to be in the middle of nowhere.

"Suicide is not an option."

2009-02-19T11:04:00.002-06:00

I have been in acute psychiatric wards for "crisis stabilization" several times in my life. It has usually lasted about a week and it seems that the only point is to get me to consent to not committing suicide. I'm pretty sure that crisis stabilization has done me more harm than good.

My depression is what has led me to consider suicide. One of the ways I devised early on to cope with my depression was to convince myself that I was a very bad person in very many ways and that depression was the punishment I deserved. Doing this took away some of the confusion and frustration that came from an otherwise inexplicable intense punishment.

When I have been suicidal, I have thought of suicide as a way to relieve my suffering; I don't think that is an unusual way of thinking about suicide. When I have been in crisis stabilization, I have been told many times, "Suicide is not an option." Consenting to not commit suicide always meant, to me, consenting to live a long and miserable life. Convincing myself to consent to not commit suicide has always meant concluding that I was such a terrible person that suicide was not an option because suicide was too good for me. I convinced myself that suicide was too good for me because I was undeserving of the relief it would offer from my suffering, which was the punishment I deserved for being such an awful person. That was the only way I could rationalize the prohibition that I get relief from my suffering. This is what had to happen between the time I was admitted and discharged from the hospital.

I consistently left the hospital significantly more depressed than I came. At home, my depression sometimes lifted just enough for me to again believe that I was worthy of suicide. This meant a return to the hospital to be pushed deeper into depression and it meant entering into a cycle of returning to the hospital over and over again. (I sometimes heard staff talk about "revolving door patients" who would stop taking their medicine once they started feeling better, which would lead them to descend back into illness and return to the hospital. They always blamed the patients for this. They made me a revolving door patient, but I wasn't doing anything wrong, even according to their rules.) This is a similar situation to people who become suicidal shortly after beginning anti-depressants; for many people, being suicidal occurs not at the deepest depression, but when their depression is slightly less severe. Every time my depression lifted enough for me to be suicidal, I was put back into a position where I was forcibly pushed deeper into depression. This makes it very difficult to recover from depression.

I don't know how many patients have experienced crisis stabilization in such a counter-productive way. This wasn't something I could articulate this well while I went through it, though I could articulate that every time I was in the hospital, I had to resign myself to a long and miserable life. Perhaps someone should have noticed what was going on that made me a revolving door patient, though I can understand how that would be hard to see, especially since I don't think I ever mentioned the resignations I had to make. Still, I think this is important for professionals to know, even if this specific very unfortunate situation is uncommon, that their best intentions can sometimes go terribly awry in ways they never could have imagined.

Dealing with Imperfection

2009-02-09T15:19:00.002-06:00

I have a guest post, "why won't professionals answer patients' questions" over at Mental Nurse. It is the beginning of a series they titled "Ask the mentalists." I'm excited to continue the series. This post has gone well.

You might not have noticed, but I have a lot of criticisms of mental health care. Sometimes people react with, "But professionals are people too! You can't expect perfection from them!" Actually, though people have made that argument to me, I keep it in mind far more often than anyone actually makes it. I am okay with professional imperfection; I completely understand that professionals can't be perfect. But of course I do have some objections:

1. Professionals sometimes object that, within mental health care, their patients expect them to be perfect. This is okay. Professionals will then tell their patients that they are not perfect. This is also okay. This becomes not okay when the professionals say they aren't perfect, but act as though they are. Examples of professionals acting as though they are perfect would be accepting what one another say as gospel truth while questioning the veracity of what patients' say or refusing to admit to having made a mistake. When patients look at professionals as being perfect, there is a reason for this. Part of the reason is that, within mental health care, professionals are models of good mental health for their patients. Another reason is acting perfect and treating one another as being above reproach. As a patient, I was not fooled by these things, though I did not always stand my ground on them. I imagine that some patients are fooled. When they give an accurate account of a situation that contradicts the account given by a professional, they may question their own account rather than consider that it is the professional who is wrong because, in mental health care, it is assumed that the professionals are usually right and the patients are usually wrong.

It is okay to be imperfect, but if you are imperfect, you don't get to pretend that you are perfect and complain when your patients are convinced by this. If you are going to act as though you are perfect, then you actually have to be perfect.

2. The impossibility of perfection doesn't mean that I can't hold professionals to high standards. Professionals in all professions are held to high standards. Teachers are expected to know their subject areas much better than the average person. Police and chauffeurs are expected to be better than average drivers. Accountants are expected to have better than average math skills. I wouldn't necessarily expect that mental health care professionals have better than average mental health because I know that mental health is not entirely in one's control. However, I would expect that they have better than average communication skills, critical thinking skills, and self-awareness. I expect these things specifically because they teach these skills to their patients, so I expect that, like any other teacher, they will have better than average skills of the sort they are teaching.

When I see a professional complain to someone about a coworker behind her coworker's back, I expect better than this. I will, and did, think, "I don't really expect that they will all love all of their coworkers, but I do expect that they will talk to the person with whom they have a problem like this. Isn't this exactly what they are telling me I should do, talk directly to the person with whom I have a problem? Why don't they do this themselves?" I don't think it is unreasonable to expect mental health care professionals to use the skills they teach me.

3. The impossibility of perfection doesn't mean professionals don't have to try, it means they don't always get it right. It means that, when professionals employ their critical thinking skills, sometimes they miss something, it doesn't mean that they don't employ critical thinking skills. Allowing for imperfection also means that sometimes mistakes are made and that those mistakes have to be fixed or apologized for. If you don't fix or apologize for your mistake, you have compounded your mistake by making a second. If you never apologize or fix your mistake, you aren't even trying. In that case, the problem isn't that perfection is impossible, it is that you aren't trying. Mental health care professionals do not have to have perfect communication skills, critical thinking skills, or self-awareness; they have to have those attributes and they have to be better than average. The impossibility of perfection also doesn't mean that you don't learn from your mistakes so you can do better in the future. The impossibility of perfection is not an excuse for not trying.

Presenting to the Professionals

2009-02-04T14:09:00.001-06:00

I spoke at my something today. It turned out that it was a continuing education workshop/seminar type thing that professionals who already work at the hospital have the option of attending, but that professionals who are new to the hospital must attend. I was told that this time, there were no new people, and I did recognize a couple of nurses. This particular hospital is pretty good compared to the others I've been in, and the nurses who I recognized were pretty good compared to most staff at this hospital. I suspect the same is true of the rest of the people who were in attendance. I was relieved that no one I recognized was involved in any of the situations I used as examples. Eventually, I think it would be really good to be giving a presentation like this to those people, but for my first time, I think it would have been overwhelmingly awkward, even if they didn't remember the situation themselves.

I talked about using the positive style of communication, the one professionals teach their patients to use, to build rapport with patients. I named a bunch of different ways in which I have felt invalidated by mental health care and how these same sorts of situations don't have to be invalidating if professionals actually communicate with their patients in the same way they are teaching their patients to communicate. I felt like I was doing a lot of insulting the professionals, even while I was telling them not to insult their patients (that's a pretty big rapport-killer). That part felt a bit uncomfortable, so I joked about it, and they told me that these are things they need to hear and not to worry about insulting them. I first gave a sort of soliloquy of a presentation, and then offered to answer questions and give situations that I had experienced handled poorly for which they could offer different solutions. I liked the interactive part a lot more, because I knew where I stood with them; I think I was in good standing. They challenged a few of the things I said, not so much as a "you're wrong," but more of an "is there any way to handle situation X to your satisfaction?" (answer: yes, regardless of what X is, even if X should never have happened). They really heard me out and allowed me to challenge them, which felt really, really good. Some of them even said they felt twinges of recognition like, "oh crap, I've totally messed this or that up at some point," which I find a good sign, because it means they weren't just dismissing me.

I must not have insulted the professionals too much, anyway, because the woman who invited me, invited me to the next training like this (it happens every other month). They thanked me, some more eagerly than others, and I think that some of them really are glad I came in more than just a nominal, "it is important to hear the perspective of a patient" sort of way and more in a "because we had no idea we were making these mistakes" sort of way. The woman who invited me also mentioned that, after I left, they continued talking about the things I brought up and considered that their perspectives on some things may be very different from the perspectives of their patient in ways that hadn't occurred to them before.

After I left, I, of course, thought of additional answers to some of their questions, ways I could have explained things differently/better, and things I could have emphasized more. Still, it went really well for my first time, and it was a small audience (maybe 15ish people). I'm excited to have done it, and I am looking forward to doing it again and presenting on other topics in other settings.

Octopus Needlebook

2009-02-01T19:12:00.003-06:00

Once upon a time, Sarah asked me for a needlebook. I asked her to give me a prompt. She told me that she wanted it to be teal and orange. I decided to freehand an octopus on the cover. I've never freehand embroidered before, so it was a bit of an experiment. I think she would have been happy with her needlebook even if the octopus was lumpy and deformed, but I'm happy he turned out so handsome. I think that I will have to do more freehand embroidery in the future.

Validation, part 2

2009-01-26T00:10:00.000-06:00

One source of invalidation for patients in mental health care is being lied to by professionals. I wrote about how lying can have more significant consequences in mental health care than in other contexts. Now I will give some examples.

Some lies I have been told have concerned things that happened within mental health care. One day, while in an eating disorders treatment program, the full population of the program was split into two groups: one group, the "adult group", was 18 years and older and one group, the "adolescent group", was under 18. The next day, the groups were identical, patients were still referring to them as the "adult group" and "adolescent group" without any objections from staff, until it came time for group therapy and we had to split up. I went to the "adult group" room and was told to go to the adolescent group. I thought that there was a misunderstanding. I was 20 years old at the time, but there was an 11 year old for whom the professionals often mistook me, so I thought they had simply forgotten who I was again (note: this is also bad for rapport). They said that, no, it was not a misunderstanding, they had changed the groups and posted lists of who was in which group. When I looked at the lists, I noticed that these groups were identical to those the day before except that I had been moved into the "adolescent group". When I asked why the groups were identical as before except for me, something which most of the rest of the patients also noticed, they denied that this was the case and told me that they had been randomly assigned. I expressed my doubt about the groups being random. I said that it was fine if they moved just me, but that I would like to know why. I said that, even if they wouldn't tell me why they moved just me, I would at least like the acknowledgment that they did move only me. I said that, even if they maintained that the groups were randomly assigned, I would like acknowledgment that they did happen to be identical to the groups the day before with the exception of me and that this is a strange coincidence. The professionals I spoke to gave me no such acknowledgment, instead they kept telling me that the groups were random and that there was nothing strange about them. I was visibly angry. It is very hard to make me angry.

In this experience of mine, I gave the professionals charged with my care several opportunities to validate my experience, but they refused every one. (An aside: as the patient, I don't think I should have been the one responsible for facilitating validation.) I was angry, so I refused to participate in the therapy. I was preoccupied with this situation, so I was not focused on the problems that contributed to my eating disorder. The small amount of trust I had in the professionals involved disappeared and I lost all respect for them. (I didn't mention it before, but I also think it is pretty important to establishing rapport and conducting therapy that patients respect professionals, which means that the professionals have to earn respect from patients.)

Mental health care professionals have also told me lies about the outside world. Positive communication, of the sort I advocate between patients and professionals, is something that professionals often advocate to their patients to use with the members of their social circles. This sort of communication is one I have come to sincerely value and wish was more ubiquitous, but even when I was under mental health care I knew it was rare. On multiple occasions when a professional was advocating this sort of communication to me individually, I would protest. I did not think it was fair for professionals to expect me to take my fledgling skills for this positive communication out into the world and try to engage others in them. At the time, I was not up to the task of swimming upstream in terms of communication style. I did not feel up to the task of offering painfully honest apologies to people who did not accept them or offer forgiveness. This was not so much about desiring reciprocation, but very much about the stress and anxiety produced in such communication, even for normal people, at a time when I experienced intense social anxiety. When I offered these protests, professionals responded by telling me that most people do communicate in this positive way. They told me that positive communication is the norm, people do apologize for mistakes and offer forgiveness, they do take care to avoid misunderstandings and trampling on the emotions of others, they don't leave elephants in rooms unmentioned. I admit, I do not know whether more people communicate this way than don't. However, in my experience, most people don't. Even if those professionals had found that most people do, in fact, communicate in this positive way, they know that not all people do, otherwise they would not have to educate their patients on this. Knowing that, which they must have, they had no reason to invalidate my protests the way they did. (If the professionals themselves really were engaging in the communication style they were teaching me to use, they would not have invalidated my protests.)

In telling me lies about the outside world, professionals have left me confused and frustrated. I start second guessing things I know to be true, which leads me to ponder the situation until I can again come to a place where I am confident in the truth of my position, thus resolving my confusion, but not my frustration. The way to resolve frustration is to talk to the professionals involved, explain myself more thoroughly, get them to understand my position, to use those communication skills they tried to teach me. However, when I have attempted this (which, again, I don't think should be my responsibility, as the patient), I have been brushed aside, told to focus on my therapy. If the professionals would talk to me, we could resolve this frustration and I could resume a focus on therapy more quickly than otherwise. Additionally, if the professionals talked to me, it would be a learning experience for me where I could practice those positive communication skills they so want me to learn.

I still have more to say about validation and the lack thereof in mental health care. If anyone has had any particularly poignant experiences with invalidation in mental health care, I would love to hear them. Perhaps I would even use them in my maybe-speech about building rapid rapport (though, if I intended to, I would certainly ask your permission first).

Validation

2009-01-22T18:29:00.001-06:00

I have been invited to speak at a something (I think it is a small seminar, but I'm not really sure yet) for professionals on the topic of building rapid rapport with patients. Hopefully I will be able to do this logistically, that is, get time off of work to go. Anyway, what I would primarily want to talk about is open, honest, two-way communication with patients, and a large part of that would focus on validation.

I'm not very good at estimating, but I would say that about 90% of the outstandingly invalidating experiences in my life have occurred within mental health care. Meanwhile, mental health care professionals frequently mention the importance of validation for good mental health, which can be very confusing and frustrating as a patient, whether or not you can identify this so explicitly. I don't think that professionals necessarily mean to do this or that they even realize that they are doing this. Perhaps they are focusing on emotional validation so much that they don't notice that they are lacking in factual validation, which also has emotional consequences. Also, I don't know that this is a universal phenomenon, but I have experienced it in every mental health care setting I have been in, so I suspect it is fairly widespread.

One way patients' experiences are invalidated is by professionals denying reality. Sometimes professionals explicitly deny reality by lying to patients. I have no idea why they would ever do this. I understand withholding information that they believe may cause more harm to patients than it is worth, but that doesn't require lying. I'm sure I have been lied to by professionals and not noticed, but in situations where I have noticed being lied to and have confronted them about it, they have denied lying to me. Lying to patients doesn't help their mental health because, if they believe the professional, that puts them further out of touch with reality than they began. There is enormous opportunity to use this to abuse patients. Sometimes, patients will just end up confused and possibly frustrated. If a patient knows a professional is lying, he or she will probably be frustrated and angry and distrustful of professionals. That means the patient is now focused on something other than therapy and will get less out of the therapy he or she does attend to on account of not trusting those providing it.

Lying to someone generally has this negative potential, but when professionals lie to patients in this context that negative potential is magnified. In general, the consequences of lies is partially determined by the content of the lies. In mental health care this is still true, but to a lesser extent because trust is so vital to the therapeutic process and because many of the consequences of lies are emotional, and emotions are a large part of the problems of mental illness and a large focus of mental health care.

I tend to be overly pithy in my writing, but I've written all this and barely scratched the surface of what I have to say about validation in mental health care. I suppose, then, that I will make this the first of a series of posts on validation. Does that make me a real blogger now?

Process of Change

2009-01-17T20:00:00.003-06:00

The View from Hell recently posted about suicide rates being highest just after psychiatric hospitalizations. It is interesting. But right now, I want to continue the discussion that started in the comments to that post.

To sum up the discussion so far, all the participants agree that coercion, even in the name of mental health care, is a bad thing. Curator, of The View from Hell, and I appreciate that some mental health care professionals, like those on Mental Nurse, are willing to consider challenges to the mental health care status quo, like whether or not coercion is okay. Steven, however, thinks that Mental Nurse contributors only pay lip service to those challenges because they still practice coercion when they go to work. Steven thinks that taking the challenges to coercion seriously means not tolerating coercion. (Please feel free to correct me if you feel I have done violence to your perspective.)

Coercion is a huge topic. It is a huge topic for another time, because right now I want to discuss how to interact with mental health care professionals, how to facilitate their transition from the current mental health care status quo to a new practice that eliminates coercion and is least awful for patients. My position is that this has to be a process. I don't think this is something that can happen all at once, nor am I certain that it would be successful if it happened all at once.

I operate under the assumption that most mental health care professionals really do want to help people, or at least start out that way. I know that this is not true of all professionals and I know that the status quo can erode those good intentions because they offer such latitude for taking advantage of patients. I think it must follow logically, from that assumption, that mental health care professionals believe that what they are doing, the current status quo, helps patients. If they did not believe this, wouldn't they quit or try to change things since they are people who genuinely want to help? I know that it isn't much to establish that mental health care professionals believe what they are currently doing helps patients. After all, there were slave owners who genuinely believed that their slaves were better off for their enslavement. Obviously that doesn't make slavery any better, nor does this make the mental health care status quo any better.

Just as I think it is unfair for professionals to expect their patients to, for example, jump from holding overly negative beliefs about themselves straight to overly positive beliefs about themselves, I think it is unfair of me to expect those same professionals to jump from believing that their current work is the best way to help patients straight to believing that their current work deeply harms patients. I think that there need to be intermediate steps. Informed consent to medications, for example, is one such step. I do not think that the current status quo plus a thorough commitment to informed consent is adequate change, but it is positive change in the right direction. I don't think it helps to vilify professionals for not changing enough right when they have made a step in the right direction. If we vilify professionals for these first small changes, they will not trust us enough to let us direct their next steps. They will react against us, which is counterproductive.

If you tell little Johnny to clean up his room, and you come by later to see that he has cleaned up the toys but not the books, yelling at him might make him resentful and perhaps rebel against cleaning up his books. If you praise him for cleaning up the toys and ask him to finish by cleaning up the books, I suspect you are more likely to get what you want.

I think that, in this process, we need to treat professionals the way we want them to treat their patients. If I yell and scream that a single step toward less awful care isn't enough, they will yell and scream at their anorexic patient that one bite isn't enough. It is for now. Tomorrow we will take two steps and two bites. In this process, it feels like a role reversal, that I have to treat the professionals as though they are sick, they are suffering from a delusion that coercion can cure mental illness and it is my job to coax them out of it.

This doesn't mean that I can't challenge professionals. It means that I tolerate imperfection because I see progress. (It doesn't mean I have to tolerate imperfection where there is no progress.) It means that when I see the progress slow or reverse, I get tough; when I see progress moving along swiftly, I give praise. Since there has been so little progress in this area generally, I do, however, feel inclined to praise any progress, even that which is long overdue, because I don't want to turn any professionals away from this progress. I am, however, just now jumping in more deeply into this process.

Making mental health care the least bad experience possible

2009-01-15T09:17:00.000-06:00

That is, in a nutshell, what I want to accomplish in mental health care. There are a lot of changes that I believe can be made by mental health care professionals and others that can make mental health care a less awful experience for patients. I know that mental health care will never be fun or comfortable for patients, but I do believe that there are a lot of things that can be done to make it less bad.

I have, while in treatment, heard that people aren't going to treat patients special in the real world outside of treatment, so it would be a disservice to treat them special inside of treatment. Aside from the fact that patients are treated differently in the outside world in some ways (i.e. stigma), I don't think those professionals are entirely right about this. In the world outside treatment, people are not emotionally stripped bare and stripped of their liberties (among other things) the way patients are within mental health care. If, within treatment, patients should be treated in a way that is comparable to how people are generally treated in the outside world, should they not be compensated in some way for having to endure these additional hardships? At the very least, shouldn't they only have to endure additional hardships that are absolutely necessary?

I don't think there is anything objectionable in that argument, but my position is to go further and say that, within treatment, patients should be shown extra kindness. I'm not promoting giving patients winning lottery tickets and tropical vacations, but I am promoting taking extra care in interpersonal exchanges with patients and avoiding the everyday offenses that occur on account of carelessness, laziness, and a lack of communication. I want this because, as someone who has experienced the depths of depression, I know that these patients can already be in tremendous pain. Adding anything to that pain unnecessarily strikes me as cruel and inhumane. Secondarily, I think that it would be a boon to treatment if mental health care professionals took this stance because so many of the improvements I want to see are applications of the very mental health principles they espouse to their patients. If a therapist tells a patient that much interpersonal anxiety comes from lack of communication and misunderstandings, wouldn't it reinforce that lesson better if the therapist endeavored to keep the lines of communication clear and free of snags? I'm not under any delusions about these things happening perfectly. I even think that when professionals make mistakes, they can use those as opportunities to teach their patients "mistakes are made, here is a positive way to handle them" by admitting to their mistakes and offering to make amends. I think that by modeling the mental health values they espouse, mental health care professionals will be able to treat their patients more effectively and make the entire process less awful for their patients.

Other than writing about my beliefs of how things are worse for patients than necessary and how I think these things can be changed, I haven't really figured out how to actually make these changes happen. I am on an advisory council at a local psychiatric hospital, which is a start. I hope that someday I can get a wider audience for some of my writing, by publishing a book (intimidating) or by publishing in a journals within the community of mental health care professionals. It has been suggested to me that I find out about being a part of the education of mental health care professionals, teaching them what things look like from a patient perspective. I've thought about doing something similar with continuing education for mental health care professionals. I've also thought about doing a sort of peer counseling with people who are currently in mental health care. I'm not sure how I will make some of those things happen, however, because I suspect that I would need the blessing and sponsorship of a professional to do them. I am open to suggestion on other ways to effect change.

Christmas Cards

2009-01-10T21:34:00.001-06:00

This year I may have gone slightly overboard with my Christmas cards. Last Christmas and Christmas a few years ago I made Christmas cards that were full of awesome; cards that were overboard by most people's standards, and not entirely manageable for me in a time-sense, but that were not too overboard by my standards. This year I went farther overboard, but managed things better in a time-sense: I actually got all my cards mailed before Christmas! Not much before, but it is still an improvement.

This year's cards were flexagons with embroidered illustrations of a Christmas tree. When I mailed out the flexagons, I included instructions for flexing and a link to an instructional video I made. Here is that video:

I found this so fun and exciting and awesome that I shall have to make more things like this. Some of the flexagon's recipients figured it out right away and loved it, some had trouble figuring it out and loved it, and a couple people were just entirely baffled by it even with me demonstrating in from of them.

Positive Illusions

2009-01-06T09:10:00.001-06:00

When I have been in mental health care, I have had a very low opinion of myself. While I can now say that with confidence, at the time I was highly ambivalent about whether my estimation of myself really was overly negative or simply accurate. One thing I did know at that time was that when mental health care professionals tried to talk me out of those negative beliefs about myself, they tried to convince me to replace them with beliefs that were overly positive. I was unsure whether, wrong or not, I wanted to revise those negative beliefs because, even if they were wrong, they did serve a purpose for me. However, I was certain that if I were to trade my negative beliefs for something more positive, that I was absolutely not willing to believe anything more positive than accurate. Even if I had been willing to believe something more positive than accurate, I think it was a little much to expect that I would be able or willing to jump all at once from overly negative beliefs to overly positive beliefs.

When I made my objections to the mental health care professionals at the time when they were trying to convince me to trade my negative beliefs for positive ones, I was usually told that what I thought were overly positive beliefs were actually accurate. I am fully aware that there were things that I thought were overly positive that I later learned were accurate. I expect these things seemed overly positive at the time because they were so positive in comparison to what I believed. However, there are things that they wanted me to believe that, even now, being in possession of what I consider to be good mental health, I still think are overly positive. I'm not sure if those mental health care professionals that I encountered knew that they were trying to have me believe overly positive things, hoping that I would still be better off even if I fell short, or if they really did believe those overly positive things. Whether or not they actually believed those overly positive things, no mental health care professionals I raised my objections to were willing to discuss this with me. I found, and still find, this very frustrating.

This issue also gets at the fact that not everyone has the same idea of what it means to be in "good mental health". If it means being assertive and confident without consideration of how one comes to be assertive and confident, then perhaps it is appropriate to believe things about oneself that are more positive than accurate. That is one definition of mental health, one that I suspect is common among mental health care professionals, but it is not my definition. In my definition, lying to oneself is an indicator of poor mental health even if it results in assertiveness and confidence. In my definition of "good mental health" it is not appropriate to believe things about oneself that are more positive than accurate (nor, by the way, is it appropriate to believe things about oneself that are more negative than accurate).

I've had these ideas floating around in my head for a while and during that while I was frustrated because I wasn't seeing any recognition of these ideas, but I was pretty sure that I wasn't just completely wrong. Then, when I was listening to RadioLab, I heard mention of the idea that maybe depressed people aren't pessimistic, but realistic, and that maybe most people are actually more optimistic than realistic. While they were speaking more of how one thinks about larger issues rather than of one's self, I was thrilled to hear recognition of this even as a possibility. At some point I heard of the book Positive Illusions by Shelly E. Taylor, which discusses the idea that believing things that are more positive than accurate promotes good mental health. I have borrowed this book from the library. I will be reading it soon.I hope that this book will be able to answer some of my questions.

At this point, I think my position on this is: you can have your positive illusions if you want, but please don't try to convince me that I need them. If you prioritize positive emotions, assertiveness, and confidence over being honest with yourself, I'm fine with that. However, I happen to prioritize honesty over positive emotions, assertiveness, and confidence. I can agree to disagree and let us live our lives differently in this way. On one hand, I don't understand why someone would be willing to live with positive illusions without explicitly making this decision, because it is such a foreign order of priorities to me. On the other hand, there does seem to be some logic to someone who is willing to use positive illusions for the sake of positive emotions, assertiveness, and confidence also being the sort of person is not troubled by not having made this decision explicitly and deliberately. Either way, I have made my decision rationally and deliberately and apart from mental illness; I'm willing to discuss it, but I think it is inappropriate to try to coerce me to accept positive illusions of myself. I think it is more inappropriate to try to coerce me to change without being willing to discuss this. I think it is even more inappropriate for someone to coerce me to change when I have chosen my position more thoughtfully and deliberately than did the person who tries to coerce me.

how to become a conservator

2008-12-21T22:43:00.004-06:00

Last week I visited the conservation librarian at Northwestern University. It was beautiful. I went because a conservation librarian is what I want to be when I grow up. The woman I talked to even went to precisely the same school as I am thinking about going to: the University of Texas at Austin. (Note: that isn't much of a coincidence because they have the only conservation librarianship program in the country.) It made me very excited.

This visit also made me revise my plans in this area quite a bit. I was planning to do a library degree before I started the Austin program, but that isn't apparently a very worthwhile thing to do. Instead, what I need to focus on in the next few years, in this regard, is the prerequisites to the Austin program. As far as graduate programs go, this one has some hefty prerequisites, partially to weed out the people who would eventually drop out. One is three semesters worth of lab chemistry. I will also need to take legitimate bookbinding classes. While I have done some bookbinding, I need to learn the "proper" kind. That is, I can bind books that work, in ways that I kind of dream up myself by combining techniques from different places; but I need to learn how to bind books in traditional ways because those are the ways that the books I will one day conserve are bound. I also need to get some conservation lab experience, but this will best be done after I learn legitimate bookbinding and read up on terminology and history and things because I will get more out of the experience the better I understand what is going on from day one and it will make labs more willing to take me as a volunteer because they won't have to teach me all that background information.

This is kind of a weird field to go into I think. Not because it is so small, which it is, but because the way in is to basically cold call people and say, "hey, can I talk to you about this stuff?" And then I get a little bit of an idea of what I need to do to get into this field. But then I also know that another of the future steps is to cold call people again and say, "hey, do you have the time and space in your lab to take on a volunteer?" Part of the conservator's code of ethics apparently involves a commitment to teaching the next generation of conservators. Since this is how people enter the field, it couldn't happen if current conservators were unwilling to let future conservators in their labs. I also know that taking on a volunteer takes a lot of time away from the lab's work at first. Eventually a volunteer can become an asset to a lab because they will be doing some of the work, but initially they have to be taught which takes time away from other projects. So while they are dedicated to teaching the next generation, they do not necessarily always have the time.

I am excited, but I am also intimidated. Hopefully some of that intimidation will wane as I take steps toward the Austin programs (which only takes 8 students a year!).