A week or so ago, I read a piece on the site The Mighty, which is where people talk about life with chronic illness-or their lives with a family member who has it. I can't find the link for this particular story, but it was written by a mother who talked about how her daughter's illness did define her--and she was sort of glad it did.
I gotta say, I don't agree.
I'm a lot of things.
I'm Catholic. I'm a girl. I'm an American. I'm a dramatic contralto. I'm mathematically impaired. I'm near-sighted.
These are all things I would list before I say "I'm a girl with a lung transplant." "I'm a girl with CF." "I'm a girl who can't hear."
Why in the world would you want to describe yourself by what you are not, or by what is wrong with you? Why define yourself in a negative way?
There was a student at my college who had a chronic illness. But unlike me, this person definite him/her self (yeah, I'm being really vague, here) by the illness. It was the first thing his professors knew about him. It was the thing she led with.
This repelled me. My professors didn't know anything about my health until I was in the ICU for two weeks and I was missing class. Then I (well, my parents) told them.
Sure, there are things that I can't do. But why would you define yourself that way? "I can't do differential equations." "I can't spell." "I can't swim." Why in the world is any of that important?
I'm not tossing out the old rag "everyone can do whatever they want!" "You can be anything you want to be!" Because that's crap. It's not true. I can't play in the WNBA. I can't be a swimmer like Michael Phelps. I can't be a prima ballerina.
Everyone has limitations. It's part of life. None of us are perfect. But why you would lead with that, or make that the focal point of your life, is beyond me. I don't get it.
Is this part of me? Well, yeah. It's a part of me like my hair color or my eye color or my height. But I don't let those things tell me who I am, and that's not what I lead with at a party.
Pre-transplant, I never really talked about my CF in public at all. Now, I do it because I want to spread awareness of organ donation. But I also think that's there's a fine line between talking about it/raising awareness, and over-talking it to death, and making it the KEY POINT IN EVERYTHING.
If I could tell parents of kids with chronic illness one thing, it would be to let your kids live their lives as normally as possible. Don't coddle them. Don't make them afraid of life. Don't baby them. And also--tell them that they are more than the strange outcome of their genetics or malfunctioning cells. Yes, they might need some accommodation. Yes, they might not be able to do everything everyone else in their class can do. But that doesn't make them less. Don't define yourself by your limitations.