The Assumption of Autonomy

TW: medical things requiring a gynaecologist, medical treatment and disability, disability discrimination

 

I’mma say this once more, and only once. Being disabled does not and never should come with the assumption that I do not have bodily autonomy or the ability to make decisions about my body. It also should not come with the assumption that saying stupid stuff should be taken as medical advice, because really, drink more water! eat more food! would have stopped my migraines over a decade ago if it was going to work, wouldn’t you think?

 

What I dislike most about my situation is that I have to fight for every ounce of respect I get. I don’t talk. I am perfectly capable of expressing my thoughts and wishes by typing and, increasingly, by signing. I still have enough intelligence to understand what’s going on around me, and, increasingly, to explain it to others. Just the other day I was explaining union organising theory because certain people couldn’t understand how requiring people to take off their bras to go through security could be considered the least objectionable option. (This is a thing, btw.)

 

So I haven’t slept or eaten today because I had to go to the gynaecologist. Again. And I was told, again, that because I can’t talk, I can’t have the hysterectomy I have been asking for for years, since before I couldn’t talk, since before everything. And you know, it’s risky and I might have pain after and because I already have pain it’s too hard! (Never mind that by already having dealt with chronic pain, I have support already in place and am equipped to deal with it.)

Another thing I dislike is how desensitised to this dehumanising experience I have become. I knew I would be dismissed. ‘The Implanon is stopping your periods, so it’s helping!’ No, it isn’t. I have had one migraine free day since it went in, and before that it was being changed every year because they got worse as things went on.

‘But you’re not bleeding as much, so it’s helping! Unless you don’t want it at all…’

… Because being forced to choose between knowing I will have a migraine every day and not knowing when it will stop as it builds up and up and up and up, is meant to be a choice?

‘But I talked to a senior gynaecologist who said I shouldn’t…’ But you didn’t speak to anyone who actually knows my medical condition. Never mind that that gynaecologist is actually a psychiatrist and has a conflict of interest. ‘But it’s like a family GP!’ No, it isn’t.

‘But you can just get Clearasil! Your skin looks fine!’ Really? How about that gaping hole on the back of my neck that was a pimple for three weeks until it got caught on my hair and was ripped out, and all the ones under it?

‘But the Implanon is helping!’

‘But you can take medication for your migraines!’

 

But she was totally willing to put me through a Pap smear, even though I wasn’t due for one, because she was down there anyway (and yes, that means she finally actually examined me, rather than just telling me no for no reason). Pap smears, despite what they tell you, hurt. They hurt for a week after.

 

And I have to go back tomorrow, because I couldn’t pee there. Because, you know, I can’t pee. Except when I pee six times a day.

Which, apparently, would be fixed if I drank more.

And apparently I only throw up during periods because they’re distressing and not because, you know, I physically can’t eat or see or stand. Which will be fixed by more hormones. Or something.

 

And so I’m sent home, again, just to stay in pain. And keep taking Nurofen, because it’s working. Until, you know, that goes prescription only. ‘But it’s working! And only take it when you have a migraine, like, at the start.’

First, it has to stop.

 

And I am in so much pain, every day, and I can still bloody get there, and type (on my phone, because she won’t let me type on anything else and I can barely carry my purse right now, and because I have to see her I can’t afford the GP), and I can still write here and I can still do my volunteer job and everyone else seems to think I can live on my own, manage my money, attend all the other medical appointments on my own. Everyone else, to a greater degree, still allows me that.

 

And I came home and I still can’t pee and I can’t even cry about all this, because I am so used to it and I hate that.

 

And I can force her to do it, but then I get in the situation of a doctor operating on me who doesn’t want to. I’m not sure that’s really a better outcome. Then again, if the only reason she isn’t is because she’s afraid of being sued, there are totally ways around that. You know, a waiver, actually talking to my (former) psychiatrist…

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