I think it’s pretty obvious that I am open about my life with Crohn’s disease. I am happy to tell anyone who will listen about my symptoms, the hard times, the good times, and the constant fear that the hard times will return. I’ll tell you about my days with 20+ bathroom trips, the frantic ER visits, and the crippling digestive pain.
After nearly 9 years and a lot of practice, I can pretty succinctly answer the question, “Crohn’s disease? What’s that?” I have my talking points down. I usually start with, “It’s an autoimmune disease that causes my digestive system to attack itself. I have a hard time absorbing nutrients from food, so I’m often malnourished, weak, and fatigued. It causes plenty of digestive symptoms too! Because of my Crohn’s, I have to take a medication that suppresses my immune system. So, my body doesn’t attack itself, but it also has a hard time fighting any bug I might catch.”
Generally, people respond by asking questions or saying something like, “Oh, I think my nephew has Crohn’s!” We don’t spend a lot of time talking about the whole bathroom thing unless they ask about it.
But let’s face it: when you have IBD, you often spend a lot of time in the bathroom. And for many of us, those symptoms are the first signs that something is wrong and the reason we sought medical treatment in the first place. I remember the crippling stomach pain, the constant trips to the bathroom, and the horror of finding blood in the toilet all too well.
So when I was first diagnosed, my answer sounded more like this. “Oh, ulcerative colitis?” (Remember, that was my initial diagnosis!) “Well, it’s this disease in my digestive system. I have lots of digestive issues.”
And because the way I explained my disease was different, so were the responses. I’d get responses more like, “Oh yeah! I totally ate Taco Bell last week and spent the whole night in the bathroom. I feel you.”
I would get SO very angry.
But I don’t have nasty friends. I wasn’t opening up about my disease to a bunch of jerks. While I couldn’t see it at the time, no one meant to belittle my disease or make it seem like IBD is the same as a night of having the runs.
They were just looking for a way to relate to me and trying to understand.
It’s likely that my friends meant to sympathize with me, understand me, and console me. They were doing it in the best possible way they knew how, with the limited information they had about my disease. Because IBD isn’t “trendy” and not everyone has heard of Crohn’s disease and ulcerative colitis, maybe all they knew was what I told them. As a reminder, I told them, “I have a digestive disease.”
Back then, when someone made a comment like that, I just raged in silence. Now, I try to gently explain that it’s not really the same thing. “Yeah, I’ve had that too, but not related to my Crohn’s! When I’m flaring, I often have to get out of the shower five or six times to use the bathroom… if I even have the energy to shower. No matter what I eat, it doesn’t sit well, and the pain leaves me curled up in a little ball, afraid to move.”
Usually their eyes widen a bit, and I like to think they understand more than they did.
Call me crazy. Call me a hopeless optimist. Call me whatever you want. But I think most people really mean well. We’ve all had those moments where we’ve totally stuck our foot in our mouth, right?
Ever say something you really wish you could take back? If you have IBD, do you have a standard answer to explain your disease?