If there is one phrase guaranteed to make me laugh, even if only inwardly, it is “I don’t know how you do it”. I always laugh because, really, what choice is there? Not coping is a luxury that just doesn’t apply to disability. It’s a bit like running away, no matter how fast or far you go, you always take your problems with you.
Happiness is being able to find pleasure in the things around you, the hidden secret of the disabled world of course is that we have the luxury of time to take that pleasure. Being positive though is something different, and sometimes that can feel impossible.
Its all too easy to feel overwhelmed when dealing with multiple stressful situations, and as everyone will know, when that happens it becomes very difficult to keep away the normal niggles of self doubt. In my case that is feelings of inadequacy. Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is.
I’ve never been bitter because I’ve worked hard to make sure I didn’t become so, but at times like now I find it so difficult not to be angry. I don’t mind having Ehlers Danlos Syndrome, I don’t see it as a why me, more why not me? I do mind what I was put through before I was diagnosed, and particularly how it’s impacted my life.
I’m now at that age where people have established their careers, and suddenly everyone seems to be having children. It doesn’t help that I come from an area, and particularly a family keen to link worth with status. It isn’t that I begrudge anyone what they have, but when I feel this way I begrudge the opportunities taken away from me.
I feel very vulnerable and very alone, not because of anything my friends have or haven’t done, but because ultimately, as we all are, I am on my own in this. And it’s a lonely place to be.