I’ve had a yet another boring day today so thought it seemed the perfect time to share about how isolating disability can be. Since becoming disabled my social circle has become very small anyways, not necessarily through anyone’s fault but more because going out full stop is rarer. Before my disability I was training to be a primary teacher. I hurt my back in the first term and had to give up the rest if the year. When I returned I was part time in a wheelchair and used my walking sticks/crutches the rest of the time. While others arranged evenings out and became good friends I had to shy away, making some excuse so I didn’t seem like I was being difficult. “No I can’t come out tonight, my mum is ill” when really it was I need to go home and lie down to recover from being sat up concentrating all day. Or I’d say “No I’m sorry I can’t go to the pub straight after uni, I’ve got an appointment” when actually it was that I didn’t want to get there and realise no one had thought about access, or spend 20 minutes dismissing ideas for places to go because they werent accessible only to end up not being able to go anyway!! It became so that people didn’t ask me to go because they knew I wouldn’t come, it wasn’t that I didn’t want to it was that it was too difficult to go. Since finishing my degree I’ve not been able to work, I was exhausted and my health and mobility deteriorated and my one freedom which was my car got taken to that scrap yard in the sky. I became very isolated, I couldn’t self propel very far (I now can’t at all) and instead of just being able to go out for the evening or day I had to plan everything. Pacing had to be planned to make sure I had the energy to get the most out of the activity (whatever it was) and access and transport had to be thought of. I had to put upon friends to get them to lift my wheelchair in and out of cars etc and push me when I couldn’t manage. It just was far more difficult to do anything. My really good friends are still there but I don’t get to meet new people and you feel bad putting upon your good ones all the time.
I think one of the biggest things too is that not going out much has left me limited things to talk about. Most people talk about family, other friends, places they’ve been or things that have happened to them, they talk about work and things on tv etc too. This is not a criticism, it’s just what people do usually chat about. But I don’t usually have those things to talk about. My world is consumed with health issues, doctors and hospital appointments and managing my illnesses. Instead of talking about normal things I have only my disabled equipment and issues to discuss and it might be that the only people I’ve had to talk to all week are my parents (as I live with them) and the only times I’ve been out were to the doctors. It does limit ones conversation rather!!! Imagine a friend telling you all about their new workspace and all you have to tell them is about the incontinence nurse, it isn’t really what anyone wants to hear about. I have some great friends but they live in the “real world” where you go looking at new cars not new wheelchairs. You try not to bore people with all this but then what do you talk about when they ask what your week has been like?? It certainly makes you an expert in talking about the weather, or turning the conversation back to the friends interesting week!!!
I know that it’s hard to be friends with a disabled person, but it does mean an awful lot to me when people actually stick by me. The ones who’ve visited me when I’ve had operations or who’ve text me because they know I’m struggling are so appreciated. As are those who still ask me out, who will lift my wheelchair and push me around. But what definitely means the most is those who understand that I might not txt all the time because I don’t have anything to say; I might not be able to go out as much or to the same places; but I am still me. Thank you to those of you who still remember that xx