Monday, April 1, 2013

Chronic Illness as a Disability

I have a friend who has been suffering with kidney problems for more than a year now. She gets sick with no warning, runs high fevers, has very little immune system and suffers chronic back pain. She visited the hospital more than 50 times this year. Like any other college kids, she wants to be focusing on school and a career, spending time with friends, partying, seeing her boyfriend. Sometimes she does that. Sometimes however, her illness causes her to miss class or work, do poorly on tests, and
stay home in bed while her friends are doing fun things.
This isn’t a disability like autism that has a culture and a body of knowledge around it. Neither is it really obvious to people around her, day to day. But people who suffer chronic illness can attest that it absolutely fits the definition of disability – something that interferes with normal activities or behavior. Illness is a largely unrecognized category of disability, outside of the communities of those afflicted.
Even small things like allergies can require a surprising amount of energy and fortitude to deal with. I am badly lactose intolerant. I can’t have pizza, lasagna, mac ‘n’ cheese, cheese sandwiches, yogurt, cereal, ice-cream. There are plenty of other delicious foods out there, and I made my peace with it a long time ago, but it means when I go to a party, I have to pack myself a dinner because chances are 99 out of 100 that the meal will be pizza. When my friends want to go out for ice cream, I can’t go along. It is both stressful and isolating. Something lots of people take for granted takes an extra dose of energy and attention for me.
For someone whose chronic illness is not easily controlled, and affects their entire life, that is magnified hugely. My friend is energetic, outgoing, a club leader and active in her religious community. To meet her, you would have no idea that she struggles to find energy for minor tasks, to finish her schoolwork when she is feeling sick, to pay huge medical bills on top of tuition and living costs.
You can’t always tell when someone is sick, or struggling for some other reason. Something you can do is say “How are you?” and you mean it. Don’t judge people too harshly for not brushing their hair, or getting poor grades, or always staying home. People with chronic illnesses don’t fail to do things, they accomplish much more than healthy people ever do, when each day is a victory.

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