5 Things I Want People to Know About IBD

I was diagnosed with ulcerative colitis when I was just 8 years old.

Having an invisible illness has been both a blessing and a curse. I have the freedom of deciding if I want to tell people about my inflammatory bowel disease (IBD), but on the other side, when I’m sick, it’s hard for people to tell. Sometimes people don’t believe I’m sick.

I’ve told some of my friends about my colitis, but when I do they often have no idea what I’m saying, so…

Here’s what I want everyone to know:

1. IBD (most commonly Crohn’s disease and ulcerative colitis) is inflammation of the digestive tract that can cause pain, bloody stool, weight loss and diarrhea, but it affects each person differently. If someone has Crohn’s disease, it means there can be inflammation anywhere in the digestive tract. If someone has ulcerative colitis, it means there is only inflammation in the large intestine.

2. There are no known causes of IBD and about 1.6 million people in the U.S. have some form of IBD, according to the Crohn’s and Colitis Foundation of America. It seems to me that many people I know also know somebody else affected by IBD. But there are still millions of people that have no idea what IBD is. That’s why I’m trying to spread awareness.

3. There are many other ways that IBD can affect someone other than its direct physical effects. Ulcerative colitis has affected me both physically and mentally. Living in constant fear that a flare up will happen or constantly being sick can have a big affect on your mental health. For me, it has caused anxiety and depression. This can make things harder to deal with sometimes but I have also learned some very helpful coping skills.

I am definitely a more resilient person because I have experienced these things.

4. Poop can kind of be an embarrassing subject, which can make it hard for people to talk about their disease. Only recently have I been more honest and open about my disease. Nobody wants to be known as the kid with the “pooping disease,” so it can be hard to bring up this illness. I’ve had to answer some pretty crazy questions (for the last time no, you can’t “catch” IBD from me!). But I’ve come to realize the more open you are, the more comfortable you will be around people.

5. I want to be treated just like everyone else. Yes, I might have an invisible illness but that doesn’t mean I want to be pitied. I want to be invited to plans even if I have to decline because I am too sick. I don’t want people feeling bad for me all the time; I want people to be my friends and be there if I need them. People with disabilities are just regular people.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.