I used to avoid it, I never said I was disabled, I didn’t identify as a disabled person; I was (and am) disabled but if I admitted it to other people, I was admitting it to myself and I didn’t want to do that. If I avoided it long enough, my health would miraculously get better, wouldn’t it?
Talking about my condition used to be such a struggle, at the beginning I didn’t really understand it so how could I tell someone else? I used to say, ‘I’m in pain, a lot’ or ‘I just dislocate.’ JUST? Just dislocate; as if that’s something normal and everyone does it…but to me that is what I consider normal, I’ve been disabled longer than I’ve been ‘healthy’ so pain and popping joints are an everyday occurrence.
With an invisible illness, some days can be better than others, if you meet someone new on a good day, how do you tell them that these ‘good days’ don’t happen that often? To be perfectly honest, I didn’t say anything. If I was having a bad day and had to cancel plans, I’d say I wasn’t feeling well, I didn’t go into detail, I didn’t mention my knee had dislocated and my back was going into spasm leaving me incapable of moving. It was too difficult. It was too hard to let people know that I was different, that I had limitations and my body broke sometimes.
As relationships failed, friends dwindled, I learnt to listen to my body a bit better and I realised that I wasn’t doing myself any favours by pretending. I realised that I was living behind a mask and I wasn’t making connections because I didn’t accept myself. I needed to get over my fear of being different and acknowledge that I had a disability.
I do now. I talk openly about my conditions and when I meet new people I’ll gladly answer any questions they have; as long as they’re not being rude or judgemental, if they are, my boyfriend deals with it. I still feel awkward when someone asks me about my occupation, especially if I’m not using my wheelchair or they’ve not seen my crutches but that’s my obstacle to overcome and it leads to a conversation about my health, which I’m totally fine talking about (now). I’m quite a chatterbox so if questions are too probing or I don’t particularly want to go into a lot of detail I can easily divert the topic.
My name is Sarah and I’m disabled.