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.”

Meet my Miami honoree, Izzy. Gosh I love this tiny activist.

Meet my Miami honoree, Izzy. Gosh I love this tiny activist.

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.

So much rage inside.

So much rage inside.

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?


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3 Responses to Looking for a Way to Relate

  1. Stephan says:

    My answer is pretty similar to yours and I am very angry when someone tells me a comment like the one mentioned. I don’t even know how to react most of the time. Now, I am trying to avoid telling people about my Crohn’s altogether because it seems like I am giving away my weak spot and when I expect it the least I get attacked. Also, I was never really the friendly type, but I noticed Crohn’s has completely made me 100% anti social. I try to smile and talk to people, but in my head I just want to get away ASAP. I don’t know how normal this is, but I feel a hatred towards almost everybody.

  2. Kristy says:

    I really enjoyed reading your blog. I can relate 100%. I’m 31 year old female diagnosed about 5 years ago and I feel like I just read my life…It’s comforting to hear i’m not alone with my struggles. What are you doing as far as controlling your flares, have you had surgery?

  3. Angel says:

    Loved your blog! I have had Crohn’s for going on 16 years. I love when people ask me questions about it, one thing we all have to remember is that a lot of times people may come across mean but it is simply because they know nothing about our disease. There are no stupid questions when it comes to IBD if by explaining (what some think is a stupid question) we can get one more person to understand and maybe even help with the fight to find a cure. So keep up the great work in spreading the news of Crohn’s.

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