This column article written in February, 2001.
When you are disabled, especially when you have multiple things wrong with you, it's very easy to become those disabilities. Be nothing more than the sum of your deficiencies and problems.
I am surrounded by carers, doctors, therapists, support groups, capsules, pills, potions, powders, braces, sticks, wheelchair ... I sometimes feel like I'll disappear under the weight of them. Lost from sight forever. And nobody will notice, especially not the doctors and carers who see only what's wrong with me, and never what's right.
Sure, I am a person with problems. But I am just that - a person with problems. Not a set of problems with a person attached. I think the distinction is important.
I think it's easy for people with invisible disabilities (IDs) to disappear under their disabilities for several reasons. Firstly, many invisible disabilities are medical in nature and require numerous doctor visits, hospitalizations, medications, and other things that constantly remind you there's something "wrong" with you.
Also, people with IDs are constantly surrounded by people who are trivializing and minimizing what's wrong with you, and denying how disabled you are. This means that to be treated in an appropriate manner, you have to fight to be seen as disabled. Most disabled people fight to prove that they can do stuff. As people with IDs, we more usually have to fight to prove we can't do stuff. It's easy for that sort of attitude to get inside your head, and then you really believe that you can't do anything useful.
So, how to avoid "disappearing" into just being a disability?
I try to regularly remind myself that I'm still me under these problems. There is more to me than my own problems. Thankfully!
I can express this other side of me by writing articles, by chatting to friends, by playing music, by having people bring pizza over and having an "evening in", by doing anything that doesn't relate to disabilities. Unfortunately, the sicker I get the harder this all gets, but I still do my best to try. Even a short phone call with an understanding friend, one who realizes that I don't want to just talk about how sick I feel, can make me feel more "normal" and more part of the "real world".
If you've been a dancer and a rock-climber before you got sick/disabled, then obviously you'll have to make some changes in how you occupy your time! Depending on your disability, you may be able to adapt the activities you used to do, or perhaps pick up some new interests. There's always something though, even if it's just watching a plant grow, or composing poetry in your head and dictating it to a friend.
I think it's important to be more than just "a disability". Everybody has skills and talents and interests of their own, even if they're bedridden. Being able to be a whole person, letting all sides of your personality out is healthy and good.
