´óÏó´«Ã½

I think I may have persuaded my friends to feel too positive about disability.

This week I am in a STROP. I'm not happy. I am frustrated and grumpy, I keep losing my temper, and all I want to do is hide under the duvet for a very long time. The Girl has been running around hiding all the breakables in the house, as I have a tendency to THROW THINGS WHILE SHOUTING OBSCENITIES when I'm feeling like this. The source of all this is impairment-related, but it's not pain, fatigue or poor mental health that's set off this anger management problem - it's a diagnosis. Or, more specifically, the implications of said diagnosis.

It turns out - after about two years of trying to find out exactly what's wrong with me - that's it's a genetic disorder that I had suspected (but was still hoping I didn't have). I've been trying to persuade the doctors to look for something like this since my condition went haywire a couple of years ago. And long before that, my mother was taking a very small lilwatchergirl to every GP and consultant she could find, in the hope that they could tell her what was wrong with me. Her conversations with them, from what I'm told, went a bit like this...

Mother: She's clever and talkative, but she doesn't walk or even crawl yet, at two years old.
Doctor 1: You are neurotic and over-anxious. Go away.

Some months later...
Mother: She still can't walk or put weight on her feet. Something is wrong.
Doctor 2: She has some joint problems. It's nothing serious.
Mother: It seems to be quite serious.
Doctor 2: You are neurotic and over-anxious. Go away.

Some years later...
Mother: She can't write or use her hands properly.
Doctor 3: She'll be fine.
Mother: Her teachers are worried.
Doctor 3: You are neurotic and over-anxious. Go away.

Which makes it quite interesting that, over the past couple of years (and in occasional incidents at other times before that), my own conversations with doctors have turned out something like this...

Me: I am in serious pain. I have terrible, mind-numbing, bone-crushing fatigue. My mobility is deteriorating. There are signs that my heart isn't working as well as it should. I live in a constant state of 'brain fog' where confusion and forgetfulness make me seem completely stupid, even though I'm really not. I don't sleep properly. I get migraines and dizziness and I pass out. My joints aren't working. And lots of other things are wrong.
Doctor: Don't you have a history of mental health problems?
Me: Yes.
Doctor: You are neurotic and over-anxious. Go away.

It was only by sheer power of persistence - I'm very good at being irritating - that a GP finally agreed to send me to someone who specialises in the disorder that I suspected, thanks to my medical history, that I might have. And so it turns out that neglect from all these doctors, starting from the age of two and going on for twenty-seven years after that, has led to the pain, fatigue and mobility problems I'm having now, and more. I'm not a neurotic hypochondriac - all the 'random little symptoms' that have bothered me for years are related to something bigger, not to mention the much bigger ones that have developed recently. And yes, it should be a relief to find that out, and to know that there are possible directions of treatment, even if the prognosis isn't all that great. But I'm not relieved. I'm pissed off. Mostly at doctors whose cheery assumptions have left me in much more of a pickle than if I'd had treatment as a child. But also at life. Which sometimes just sucks.

I know that disability is not a tragedy: that impairments don't have to ruin our lives, and (of course) that it's very good that I don't have something more serious. But sometimes even Social Model thinking and having a positive, determined, rights-focused outlook don't help you feel better about the years of pain, mobility problems and other complications that you've just found out you're going to live with from now on. Nothing has changed - I'm in exactly the same situation I was in this time last week, when I thought I had a condition that wasn't necessarily permanent. But that doesn't change the fact that I feel really rubbish.

So you can see why I'm finding it a bit tricky that I am now having the opposite problem to the ones I used to have when communicating life and health issues to members of my (small, but beautifully weird) social circle. My adorable, well-meaning friends are too accepting, too open-minded, too keen to tell me how wonderful this all is. I should be pleased to hear them saying that it's good that I know what I'm dealing with now. They're not going off at the deep end because I might be a wheelchair user for the rest of my life, they're not too upset by seeing me in pain, they're not afraid of the 'illness' concept, and I do appreciate all that. They, like me, have adjusted to the idea that disability isn't the worst thing in the world, which is a great improvement on the attitude of the friends (when I was much younger) who ran away screaming when they found out I had mental health problems. But still, I'm frustrated that no one can see my frustration. I need a week (or six) to have a strop, cry, worry about the future, get stressed out with the present, and be really irritated about the past. Even if that reaction is completely out-of-proportion, or just downright silly.

So there.