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On Living With Ulcerative Colitis: The Importance of Friends Who Get It

Posted Nov 14 2011 7:00am

I am blessed.

When I was diagnosed with ulcerative colitis, I was surrounded with love and support by my family and friends. Mom took me back to college and lived in a Marriott for a week to help me adjust. Both my parents constantly checked in with me once my mom was at home. My new boyfriend (Goose!) and my friends were kind and understanding, happy to spend nights in sweatpants watching movies so they could spend time with me when I wasn’t feeling up to going out. My college was incredibly accommodating and helped me finish my semester strong.

I thought I had all the support I needed.

And then I met these two.

Is our love for each other obvious?

Meet Ally and Luke, my first two friends with IBD. (IBD stands for Inflammatory Bowel Disease, the broader category that includes both Crohn’s disease and ulcerative colitis.) Since joining Team Challenge, I’ve spoken on many a Thankful Things Thursday about how grateful I am to have joined . The biggest reason that my experience means so much to me is all the wonderful people I’ve gotten to know with IBD.

I met Ally in August, at a CCFA event for their IBD Icons campaign . It was my first event with CCFA, and I was incredibly nervous. I knew about Ally before I met her because of her work with the Illinois Restroom Access Act, or Ally’s Law . She probably has no idea how intimidated I was by her awesome, but luckily I got over that and introduced myself. A couple weeks later, I met Luke at the Team Challenge Illinois kick-off and the rest is history.

Before I turn this entire post into a mushfest about my love for Luke and Ally, let’s get to the point. It is really important to have a strong support network when you live with a chronic illness. But it’s also really important to connect with people who have been there.

Yep. Same night. Different picture. An outtake, if you will.

Remember that feeling in middle school of just wanting to fit in and be understood? The truth is, that feeling never goes away, even when we’re adults. We don’t always feel it as strongly, and we still don’t admit it most of the time, but everyone wants to know that they are not alone.

That’s really what it boils down to — the desire to be understood.

When I discuss my ulcerative colitis with people who don’t have it, I have to explain a lot. I certainly don’t mind explaining, and I really appreciate when others take the time to ask. But there’s something so nice about being able to just say, “Ugh, I’m doing that thing where I want to eat  but I’m afraid about what will happen when I do .” People who have been there can listen, talk you through it, and even make concrete suggestions.

Poor Ally and Luke must feel constantly bombarded with, “Do you ever…?” questions from me. After six years of living with ulcerative colitis and not really knowing anyone who had it, I’m still constantly amazed that there are actually people like me.

If you’re living with Crohn’s or colitis and looking for a place to connect, check out the blogs on this page .

Was there ever a time in your life when feeling understood was more important to you? Who in your life makes you feel understood?


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