9:44pm May 19, 2013

The thing about wanting a doctor to rescue me or whatever.

My neuromuscular clusterfuck was provisionally diagnosed as chronic fatigue syndrome. Just to have a word for it, so that I could get things, like wheelchairs, if I needed them. That and the ever wonderful central nervous system disorder not otherwise specified, most vague diagnosis in the world, which is how they coded my movement disorder. I doubt I have CFS, but that was the only word they could come up with then, and I needed words, for paperwork.

This was way back 13 years ago.

It was my first case manager ever. And she was terrible. And I mean completely terrible.

She basically made stuff up about me. I didn’t, of course, expect this. I expected some sort of halfway competent behavior. At our IPP (Individual Program Plan) meeting, she told me to sign a paper saying I was at the meeting. I signed it. Then she wrote up an IPP and attached my signature, as if it meant I’d actually signed off on the contents of the IPP. I hadn’t.

It included things like “she has chronic Epstein Barr virus”. No I didn’t. And I never mentioned that virus. Because I didn’t have it. Apparently that was her word for CFS. Except for the fact that it’s not the same as CFS at all. She just made it up on the spot.

Then she said that my condition was psychosomatic (that would kind of contradict the idea that I had a virus, but she wasn’t much for making sense) but that I fervently hoped that one day I would find the perfect doctor who would understand me and be able to diagnose everything.

Okay.

So I looked at my file, to double and triple check what exactly she had been told about me. And nothing was mentioned about psychosomatic anything. In fact, my doctor had listed a number of physical and cognitive disabilities. But nothing psychosomatic at all. Apparently she thought CFS meant psychosomatic. That’s all I can come up with.

She claimed she was only writing what I’d told her. Except that what she wrote bore no resemblance to what I or anyone else had told her about me. I showed the IPP to a number of people who knew me, including medical professionals, and none of them would have recognized it was about me, if my name hadn’t been on it.

Oh and what also angered me was that she wrote that I wanted to connect to the local lesbian community. This was a woman who desperately wanted to seem with it about DD people’s sexuality. She had interviewed Dave Hingsburger at one point about sexuality, and apparently considered herself some kind of… I don’t know what. She was doing that scary thing liberals do when they want to seem like they understand your oppression so well. And she clearly wanted to seem ~tolerant~ of our sexuality.

But all I had told her was I was a lesbian.

I didn’t tell her that I had any ~goals~ related to being a lesbian. I didn’t consider that any of her business.

Anything she said was at best a twist of the truth, at worst a complete fabrication.

But I wanted to talk about the thing where I was supposedly desperate for a doctor who would understand me.

Actually I wasn’t desperate for any kind of doctor at all. I had a phobia of doctors. Every time I had an appointment the next day, I seriously considered suicide as a way to get out of having to go. When I say I was afraid of them, I mean panic that started long before I even got to their office, and ended long after I left.

But there was some stereotype she was using. That really bothers me to this day.

That disabled people are basically waiting around to be rescued by a wonderful doctor.

Worse, I’d had to deal with doctors who engaged in that rescue fantasy with me. And caregivers who sort of engaged in it on my behalf. Who themselves wanted a doctor to rescue me.

Any doctor who wants to rescue me is going to be in for a frustrating experience. In fact, I generally reject doctors who think they will rescue me. Because doctors who are emotionally tied up in wanting to rescue their patients, often take it personally when they can’t. When there’s no cure. Such doctors often lash out at patients with chronic, incurable conditions. Like me. So I’m not willing to put myself in the hands of a doctor who fantasizes about rescuing me from my ~horrible fate~.

And there’s something really insipid about the idea that I sit around all day suffering passively and waiting around to be rescued. That’s not me. That’s not my life. I may have a number of health problems, but I have a life to live now, not in an impossible future where those health problems are gone.

And as for wanting a doctor to understand me, not really. Respect, yes. Understand, I’m not even sure what that means. There’s something about that whole concept. Beyond what she wrote. She was referring to an actual stereotype of people – especially women – with chronic illness. It goes along with a sense of weakness and passivity. And it’s not me. And it’s not many, if any, of us, although I’ve seen people sort of hide themselves within it, as people do with all stereotypes.

Anyway, I don’t know how to write about what I hate so much about that stereotype. What made me so mad I almost ripped up the IPP on sight.

When I told her that I didn’t agree with her IPP, she said “Fine, write your own if you don’t like it.” I of course, being unable to write things on command, could do nothing of the sort. I ended up getting a friend to write it – not just a random friend, but a friend who had worked in the DD system and written plenty of them. But I shouldn’t have had to.

There was a lot she actively lied to me about. She said she wouldn’t call me, and then she’d call me multiple times a day, even after I and staff told her to leave me alone. She told me I was my own case manager if I didn’t like her, but according to records she was still my case manager after that – she just didn’t do any of her job whatsoever. She told me whatever would get me to do what she wanted, whether it was true or not. And people were always telling me how wonderful she was and how I should’ve been grateful to have her. I can’t imagine what world this would all be wonderful in.

My favorite part of the IPP from hell was the part that said I was provocative and confrontational. I don’t know what gave her that opinion, given that I had done my best to be polite to her at the IPP meeting, and had no interaction with her that I can see that way, before she wrote it. But after I saw the IPP, I felt like getting a t-shirt that read “PROVOCATIVE AND CONFRONTATIONAL”.

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