I'm not ashamed about being ill, I willingly tell people if I need to; but I don't always want to. Sometimes I just want to be Claire. I don't want the added description, the subtitle, the byline - ill, disabled, ME sufferer. I want to blend into the crowd and just be the same as everyone else. Is that wrong?
My whole life is adapted to being ill - resting, pacing, living at home still, getting lifts from people, not staying out too long, using my wheelchair when I need to. It's all carefully constructed so that I can get the most out of my energy levels and enjoy life as much as I possibly can. I thik I do it well, most people don't know how ill I am and that's fine with me because I don't want pity or sympathy or anything else. I just want to be seen as me, without judgment or opinion.
If I'm out doing something I don't want to have to think or talk about my health, because it's a factor that I can't change.
That's not to say I don't ever want to talk about it, there are times when I need to share what is going on for me; but I want to be the one to decide when that is.
This whole topic came up because I'm going to a meeting and originally the plan was to meet at one place; but then the location changed and it would mean walking, something I can't do much of.
The people don't really know me, I haven't told them about my illness and I didn't want to, not straight away, I wanted them to get to know me first and for me to feel relaxed and comfortable about telling them; but instead I've had to be up front and explain my limitations before I even get to know them and I hate that. It felt like I was standing up and saying "Hi my name is Claire and I am disabled." A term which I hate, ill doesn't feel much better, physicall restricted? Sounds like something from Fifty Shades of Grey - no I haven't read it; but you can't really avoid knowing about it!
I had to send an email out "announcing" that I needed to know where they were meeting because I couldn't walk there and would need to be dropped off there. I felt sick doing it. It wasn't what I wanted to do; but there was no other option, it was that or cancel.
So what do you do? How do you tell people that you can't do all the "normal" things that they do? Do you find it difficult and have you found any ways around it? Most of my time is spent with people who have ME or understand it, so it's not normally an issue; but what do you do with people who don't understand your health problems? I'd love to know how you cope and what I could do another time.
Find out more about the Shame Box in my book The Choice. Imagine a world where sugar is illegal, baking is a crime and the government use diet, exercise and shame to keep people in line. Winner of the Good Housekeeping Novel Competition, The Choice is available to pre-order from Amazon, Waterstones, Book Depository.
I won the Good Housekeeping Novel Competition. My novel, The Choice, is published on 26th December 2019, by Orion
Title: The Choice
Published: 26th December 2019
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