How to Talk About Ulcerative Colitis

Yes, that is an inflatable colon.

Yes, that is an inflatable colon.

I’m not good at explaining my illness to people who have never heard of it. And a lot of people haven’t heard of ulcerative colitis. I had to explain it recently to someone I don’t see very often, and it was awkward (although it probably felt more awkward to me than to her).

I don’t want to assume people haven’t heard of UC, but it’s likely they haven’t. If they haven’t, I explain that it’s an autoimmune disease that affects your digestive system. Sometimes I’ll say it’s similar to Crohn’s disease, since more people seem to have heard of Crohn’s than colitis. I don’t use the term inflammatory bowel disease (IBD), which encompasses both Crohn’s and colitis, because people get it confused with irritable bowel syndrome (IBS), which is something else altogether.

Sometimes people ask about the symptoms, which I find kind of strange. I don’t usually want to go into it, because it’s pretty gross. Sometimes they’ll guess at symptoms, and the two that are frequently guessed are abdominal pain and not being able to keep food down. I’ve had plenty of pain, but for me that’s not really the worst symptom, and I’ve been very fortunate in that I always seem to be hungry and able to eat even in the midst of a flare. But I don’t really want to explain to acquaintances that for me the worst symptoms are frequent bowel movements that are usually urgent and bloody. That I wake up throughout the night to use the bathroom and then am exhausted all day. That I’m afraid that I won’t make it down the street to CVS without needing to use the bathroom.

So I guess I don’t have a good way to discuss ulcerative colitis with others, but I’m hoping I’ll get better at it.

How do you explain your illness to those who may not be familiar with it?