Tuesday 11 September 2012

Disability and self-acceptance

I have a medical condition. I don't know what it is - the doctors don't know what it is. All we have is the symptom, and so far, all treatment has failed. I have made adaptions, and on my best days (and I can have as many as two weeks in one go) I can barely notice I'm ill. On bad days (and I can have as many as a week in one go, with a couple of days of feeling better, before having another week of badness), I can barely stand, let alone walk or turn around. Largely, it is I guess, an invisible disability.

some people notice, some dont. If i go out in to a group of people, I tend to tell them, (I have been accused of 'zoning out', when I'm just dealing with the situation). I've had this for a year now. I am lucky enough that my work has allowed me to work from home, so that I CAN continue to work. If I was forced in to the office, I would be off sick by lunch.

I don't have the language for this. Am i disabled? Do I feel disabled? I recently told someone for the first time that I was disabled. I closed the door and felt like a fraud. On good days, I feel (every time) 'maybe this is it. maybe I'm getting better!' to then come come crashing back to earth a few days later when I wake up on a bad day. Recently I looked back on my private journal and found an entry i wrote in March that said pretty much exactly that. Yet here I am still.

I feel like a fraud for trying to 'join the ranks' of (other) people with disabilities. I don't know the language. I don't have it as bad as some of the people I follow on twitter for example. I guess some days I have it worse - I don't know. But the worst thing about this is the feeling that I don't belong in either camp. I could wake up tomorrow and be permanently better. This could be wishful thinking. googling things like 'newly disabled' gives me 'tips for the newly disabled', which instantly turns me off, and another, similar page I read gave top ten tips, but all related to mobility issues rather than chronic conditions

Perhaps 'chronic condition' would be a better term. but that doesn't in any way convey the fact that today I'm stuck on the sofa, feeling like death when I try to move. I wrote most of this blog a week ago, and have prevaricated on posting it ever since - another sign that I don't feel like I fit in. Will i ever feel like I fit in?

Yesterday, my dr gave me a new medication. I'm hoping that this will be my miracle cure. I'm hoping that in a day, a week, a month (hell, I'll take a year) I'll be better. In that respect, I recognise that I'm so much better off than the people who have no prospect of getting better. But if this medication fails (and i requested it on reading one study of 16 people) then there's a chance I'll go into some kind of spontaneous remission, but as each day passes that chance seems to diminish.

This isn't meant to come across as maudlin - I'm genuinely curious as to the thought proceses that are going on. As for being sick, I'm used to it, so in some ways, it's a lot easier than when I was newly ill.