May to me is all about EDS Awareness Month. I was diagnosed with Ehlers Danlos Syndrome when I was 19, (10 years ago now, that makes me feel old) it took over six years before I received a diagnosis and there is still not enough knowledge about EDS.
I’m really awkward when it comes to talking about my disability, I don’t know why, you’d think I’d have plenty of practice. Although I accept it, (I mean, I don’t really have much of a choice) and I can talk openly about it to anyone who is interested, when a stranger asks me, ‘what have you done to your leg?’ or ‘why’re you on crutches?’ I immediately start panicking, and the combination of anxiety and brain fog are not my biggest allies.
My usual response is, ‘erm, well, erm, I just dislocate,’ or ‘erm, I’m in a lot of pain because erm, my body is, umm shit.’ Who’d have thought I was a writer with a Masters degree in English – I can barely string a bloody sentence together. After I’ve made myself and the inquisitive stranger embarrassed and we tumble into a hole of silent akwardness, I begin thinking of all the answers I could have given. I’ve done this for ten years. TEN whole years. Don’t get me wrong, I hate it when randomers ask me personal questions about my health, but I despise the response I give even more.
I wrote about accepting my disability – and although I am accepting of it, I’m still a bumbling idiot when it comes to saying the words out loud.
However…Actually, can I get a drum roll, please?
On Thursday, I went to get my hair done and there was a stylist in the salon that I had never met before. My hairdresser asked if she would wash the colour off my hair and when I walked over to the sink using my crutches, the stylist turned to me, apologised and asked my favourite question, ‘oh sorry, I didn’t realise you were on crutches, what have you done to you leg?’
My response. And this is huge for me, was, ‘I’m disabled.’
BOOM. YES. I AM DISABLED.
No choking on words, no ridiculous descriptions of pain, no playing down my shitty condition. Just, I’m disabled. Done, said, over in two words. No anxiety, no wishing I’d said something different, just a massive relief.
I came home and told Ian immediately, I was proud of myself. I’d never been able to do this before. I’ve admitted it to myself, I’ve said it in conversations to family and friends, I’ve told strangers in a round-about way. But this, this was a defining moment and I was more than impressed with myself.
From this day forward, that’s going to be my response to any of the usual questions I get about my health.