“People who see me as different, who believe me to be in the the throes of a bad case of bronchitis or a bout with the flu.,often amuse me in a sad sort of way because they don’t know the half of it. I am a person subjected to a chronic illness, a hidden disability, and so the worst of my differences cannot be guessed at by a stranger… (she talks about how CF progresses and/or changes with time) In short, my problem is that I am a ‘handicapped’ teenager whose handicaps aren’t fixed but have changed with time.”
The following is an excerpt from the first book about CF that i’ve ever read, and also… my favorite: Robyn’s Book by Robyn Miller. I always admired the way she describes CF as a “hidden disability” or handicap. CF is not something plastered across your face that every stranger knows you have, there is no wheel chair or brace that is telling them that you have trouble doing some things. They don’t know that before I came out that day, I spent an hour doing treatments. A stranger couldn’t look at me and know that I have a fever, my chest hurts, and that I’m out of breath from climbing three flights of stairs. To me this is one of the hardest concepts for a non-cfer to grasp…but it is one of the best parts of CF, because in this way I think CF makes me stronger and makes my life a bit easier. I am able to show new people I meet who I really am instead of what my disease tries to tell me I am. I often don’t complain or tell my friends that I’m feeling lousy that day, I suck it up while trying to take it easy. On the other hand, the frustrating part is that it is hard for other people to understand how I’m feeling. Often times my friends will want to stay out late and I’ll say I have to go home and go to bed. Or maybe we decide to walk 2 miles through boston in the blazing hot humidity, while I’m dehydrating fast with salt crystals down my arms and across my forehead, and I request that we take the air conditioned subway instead. I’ve seen them get frustrated, I’ve even had some people tell me to stop being a party pooper. But I don’t get angry about these things, because I realize they don’t know how I’m feeling, especially if I don’t tell them, because I have a hidden disability that day. It’s hard for them to understand how one minute I look healthy, upbeat, and energetic and how the next day I might want to take it slow.
That said, I don’t see myself as disabled every day. Robyn talks about how she has good days and she is able to run around campus and feel great. I agree; I have 100 good days for every bad day. Yeah, on those bad days I’m feeling like I do have a hidden handicap, but it’s important that I take care of it so that I’m able to feel my best the next day. Even when I am on IV antibiotics, I know that those few weeks will only make 100 more good days. And as far as my life goes, I do not see my LIFE as disabled in any way. In fact, I think my life is less disabled because I have CF. I am able to see the beauty in each passing moment, take advantage of every opportunity, and laugh harder and longer with every happy moment. So though I may have a hidden handicap on some days, the way I live my life is anything but handicapped.
Cute pic of the Day: