8.19.2010

Betrayal

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.

4 comments:

  1. "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."

    If you were to ask me, I think that this is probably the most common explanation. I think all of the alternative explanations you offer are probably accurate, too, but less common than the inability to understand what it all looks like from a patient's perspective. I've been doing well for almost two whole years now and I'm amazed, sometimes, by my own inability to fully understand things that I wrote in my journals when I was acutely unwell. I've never really been well for a substantial period of time as an adult and it is not an exaggeration for me to say that I feel like I live in a different world from the one I used to: things are visibly, tangibly, empirically different.

    There's an implicit bias in psychology as a science to disregard any information about individual, internal, phenomenological experiences of being unwell because that is information about things that "aren't real". If you offend someone who is "delusional", particularly if that offense relates to that person's delusion, then it somehow doesn't count because it somehow isn't "real". I know I don't need to explain to you why I find that problematic!

    Anyhow, my point is that between that particular scientific bias and my own understanding of how fundamentally different the world seems to me now compared to when I was not well, I do think that most MH people are genuinely unable to understand what it all feels like to a patient. (I also happen to think that quite a few of them haven't tried to imagine in any thorough kind of way, but that's a whole other over-long rant in your comments section...I'm taking up a lot of space already!)

    I'd be really interested to hear what you think about all this. It's nice for me to have another person's perspective to read on problems like this - it really interests me both personally and philosophically.

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  2. Great job with the assertive note-writing!

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  3. Katherine --

    I understand how professionals might excuse ignoring or offending delusional thoughts on the basis of their unreality, but there is still rapport. Professionals talk amongst themselves about the importance of building rapport with their patients. There is research study evidence that a patient's rapport with the professional is a large factor in their therapy outcomes. So, even if it is okay reality-wise to disregard delusions, doing so destroys rapport, which inhibits the treatment. (I'm not arguing against you really, but against professionals who might use the excuse you mention.)

    I think that it would go a long way for professionals to imagine what it feels like to be the patient, even without imagining the mental illness aspect. I do get what you mean about it being hard to understand what it is like to be unwell, even when it is your past self you are trying to understand, I have a bit of that problem, too. I suspect there are a lot of aspects of mental illness that simply have to be experienced to be understood. But there are aspects of being a patient that suck and make things worse that have nothing to do with being mentally ill.

    I mentioned to some of the professionals in a "community group" that it feels really crummy to be confronted about doing something wrong, which can make staffing an intimidating experience. The professionals responded by telling me that they can't know how I will feel in response to them. I do not think it is unreasonable to assume that most people feel crummy when being confronted for doing something wrong. Indeed, when I confronted the staff asking for an apology, they appeared to feel crummy. Situations like that, I don't think it is that they can't understand what it is like to be the patient, I think they just don't bother.

    As for understanding the mental illness specific things, I think it would make a huge difference if they just admitted that they can't or don't understand it. Take patients' reports of the experience at face value or just say they have no basis to confirm or reject those reports. That would be miles better than telling patients they are wrong, they can't possibly feel that way, they are exaggerating, pretending, etc. Even if they can't validate our feelings, not invalidating them is much better than invalidating them.

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  4. "But there are aspects of being a patient that suck and make things worse that have nothing to do with being mentally ill."

    That's a very good point. Getting that far would make an enormous difference, even leaving the rest of it out.

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