A friend of mine has a very sick son. He is eight years old, and he has a condition that ultimately will kill him at a young age. It keeps him in a wheelchair, and because he has trouble keeping his head up, he uses a special pillow to keep it straight. It’s obvious to anyone who meets him that something serious is going on.
When they’re out and about trying to enjoy “regular family” things, like attend a movie or school event, his mom hates it. She hates it because it is inevitable someone (usually a child) asks, “Why is he in that wheelchair?” She usually answers with “Don’t worry about it. Go find your parents.” We’ve talked a lot about whether she should just tell the child who asks the name of his disease and tell him to go ask his parents about it, or whether it’s okay to be firm about not wanting to talk about it.
That boy’s condition is visible. He and his family have no choice but to reveal it when they are out of the house.
Crohn’s disease is invisible. No one has to know I have it, yet I am fine with sharing it. In fact, I feel like I have to, because I’m constantly asked why I’m so thin. “How do you do it?” people ask. Or “You’re so lucky” they will say. Am I supposed to remain silent, shrug my shoulders, and act flattered? I guess I could. But I really don’t want to. I want people to learn that about Crohn’s. Unlike my friend’s view of illness, I want to educate people about the disease. Since only a million people in the U.S. have it, and because there are many digestive disorders, I feel like raising awareness is helpful.
It’s not that it isn’t annoying. It is. If I tell people I have Crohn’s disease some people will tell me they know someone who has it, and they know it’s painful and difficult. I like those times. I don’t really have to say much and then they’ve learned, hopefully, not to ask people why they are thin. (I wouldn’t ask someone why they’re fat.)
Others will ask, “Is it caused by stress?” Those people really frustrate me. It’s a disease, not unlike others. Do you ask people who have cystic fibrosis if it is stress-related? Do you think diabetes is caused by stress? No, of course not. We understand those illnesses to be of the body, likely inherited. I can’t control my Crohn’s anymore than anyone else can control their illnesses.
I also get, “Well, what do you do for it?” I explain some of the medication options. They ask, “So, what works for you?” and then I say that there is no cure, and that medications don’t work for everyone. I’m one of those people who hasn’t found a medication that works for me yet. I may never find one. Healthy people can’t get their minds around that. “There’s no cure? But there has to be!” The last time I explained the concept that not all medications work for everyone, the person I was talking to asked, “Can’t you do anything holistic?” She has known me since before my diagnosis. Doesn’t she think that by now I would have done something else if it would work?
So, I guess I do get aggravated when people ask me about my Crohn’s disease. But, unlike my friend with her son’s visible disease, I do like to share. Maybe by doing so, I’m helping someone else in the future not have to explain herself to others.
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