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What It's Like Being Young With Crohn's Disease

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About a year ago, I was coming out of surgery for my Crohn’s disease. At 21, I had made the difficult but necessary decision to remove my entire colon and live with a permanent ostomy. I was hopeful, prepared for battle and so well-supported. Truly, I handled that surgery about as well as possible. I don’t think I cried more than once. My main role, in fact, felt like making sure everyone around me was comfortable with the idea of this surgery. Even as a young kid, I was always complimented on “how well you handle your illness!” and “ You seem so on top of things!” After all, I am a senior college student with 323,987 things to do, a color-coded planner, huge dreams, and a go-getter attitude to take on the world. Most would think I do indeed have my life together. Well, guess what? Sometimes having it all together is overrated. Sometimes neglecting your emotions for the comfort of others isn’t the right thing to do. Sometimes you need to feel without apology.

Here’s what I’ve learned in the past year: at least for me, unresolved emotions from bad medical experiences manifest as anxiety. After 19 years of chronic illness, one naturally has some things to work through. Add a year anniversary of major surgery during the heat of a global pandemic, piles of schoolwork, and well, you’ve got a recipe for anxious with a capital A. That anxiety began to severely affect my daily life, and I needed to do something about it. I began to recognize and accept my experiences for what they were … often, a crapload. Sometimes literally, as a Crohn’s patient. As goofy as it sounds, I really hadn’t taken the time to consider how my disease was affecting my mental health. Before, my happy-go-lucky attitude had internally negated my challenges. I attempted to fill the ever-gaping hole in me ripped by illness with straight As, extracurriculars, and a positive attitude. Newsflash … that doesn’t work.

Thanks to some truly incredible friends, I relearned that much to my disappointment, I will continue to be hit with unexpected things. That’s just life with chronic illness. Actually, that’s just life. Because of that, I won’t always “have my life together,” and that’s OK. I also relearned that I am allowed to feel like crap for a moment about a crappy situation (and so are you). I don’t know if you’ve been there but laying vulnerable on an operating table less than two weeks before Christmas isn’t exactly anyone’s choice of fun. It’s OK to recognize that. The important part is taking that recognition in your arms, winding up, and throwing it back. In other words, take that recognition and make something good of it. Recognizing our reality, I believe, allows us to move forward and continue to grow. Life is meant to be messy, convoluted and confusing. Working through all those things is the key to perhaps not “having it all together” but “gathering all the pieces.”

Getty image by Boyloso

Originally published: February 9, 2022
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