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Why I Get Excited When You Say You Know Someone With IBD

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Every so often, the fact that I have Crohn’s disease will come up organically in conversation. Whether it is about my eating habits or the reason I wasn’t feeling well one day, the truth usually comes out. What’s weird is that one out of three times, someone mentions that their sister or a family friend has a form of inflammatory bowel disease (IBD). That she just found out and is learning all about the new drugs and dietary restrictions.

My first thought is to say, “Wow, that’s awesome!” which is probably the worst response to someone telling me about their diseased sibling. But my reaction comes from a good place.

Far too often, people with IBD hide their disease from the public. It’s something that they are ashamed of or feel it’s too complicated to explain to others. That makes me sad.

Growing up with Crohn’s disease was no easy feat for me. I was lucky because I had parents who encouraged me to talk about and share how I was feeling with them, my teachers, and even my friends. Eventually, it became an accepted part of who I was.

Taking a step back – I was diagnosed with Crohn’s disease at the age of 9. Usually, a person is in his or her teenage years or early 20s when they are diagnosed. Safe to say, telling a 9-year-old she has a disease is difficult. I remember thinking to myself, “Can I give Crohn’s disease to my friends? Do I have to be homeschooled? Am I going to die?”

Now, I look back and laugh. But the road to remission has not been easy. I went through the trials of tests upon tests. The blood work, the steroids, the endoscopies, and colonoscopies. I have pictures of my “moon-faced” months when I was on a serious amount of prednisone. I have other pictures of me with my feeding tube, which I slept with nightly for four months during fifth grade. I have cards from friends who wrote to me when I was in the hospital for extended periods of time.

I have the memories, the battle scars, the pill bottles – everything that tells my story. And now, with people finally shedding some light on digestive diseases, I am happy (and maybe even excited?) to share my story with others.

My biggest hope is that, as IBD continues to gain awareness, we are able to build a better community for people with Crohn’s and colitis. That bathroom and poop jokes will someday be openly accepted. And that no one has to feel like they have to hide a part of who they are.

Originally published: July 25, 2018
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