When I was diagnosed with Crohn's disease [1] in my early 20s, I had no idea what it was; I just knew something was wrong. I was going to the bathroom 10 to 15 times a day, and I couldn't control what was happening to my body. My doctor explained that my colon had severely deteriorated and I was dealing with inflammation, blockages, and a long list of potential complications I'd never considered.
At an age when most people are figuring out who they are and what they want out of life, I was suddenly trying to understand a disease I'd never heard of and what it meant for my future.
Before my diagnosis, I was a dancer. I loved performing, being in the spotlight, and expressing myself through the arts. But Crohn's changed how I felt about being seen. I was dealing with something deeply personal and uncomfortable, and I didn't know how to talk about it. Let's be honest: we grow up with all these jokes about how women don't poop. As a "Sex and the City [2]" fan, I always think about the episode where Carrie makes a big deal about finally using the bathroom at Big's apartment. It's funny, but it also reinforces the idea that something as normal as going to the bathroom is embarrassing, especially for women. Now imagine being in your 20s and going more than a dozen times a day [3]. You're scared about your health, but you're also embarrassed by something society has taught you to keep private.
For years, I only told my family and a few close friends about my diagnosis. I didn't want Crohn's to define me or become the first thing people knew about me. Now, at 35, I still don't. But keeping my diagnosis private isn't just about wanting a life beyond my illness — it's also about not wanting to turn my experience into a lesson for other people.
We live in a culture that loves a comeback story. Someone receives a difficult diagnosis, faces unimaginable challenges, and emerges stronger, wiser, and ready to inspire the world. I truly respect those stories and genuinely admire the people who share their experiences to help others feel less alone. But what if I don't feel brave? What if I'm tired of talking about my diagnosis, or I don't want to find a silver lining in something that has made my life harder?
The reality is that a chronic illness affects far more than your physical health. Fifteen years after my diagnosis, I've seen how Crohn's touches parts of my life that have nothing to do with the disease itself. Dating, for example, is already hard, and having a chronic illness adds another layer [4]. There's figuring out when to tell someone, wondering how they'll react, and trying to enjoy a date when your body suddenly decides it has other plans. It's difficult to feel spontaneous when you've spent years knowing you might need a bathroom at any moment or have to cancel plans unexpectedly. Living with a chronic illness means constantly adjusting to your body, even when you're simply trying to enjoy the everyday experiences that make up a life. I navigate that uncertainty as best as I can, but that doesn't mean it's easy.
Maybe that's part of why I have complicated feelings about being perceived as an inspiration because I live with a chronic illness. I know people mean it as a compliment when they call me "strong," and I really do appreciate the kindness behind it, but I didn't choose this experience, and I don't always feel strong. Sometimes, I'm frustrated or embarrassed. Sometimes, I'm tired of having to think about where the nearest bathroom is. And sometimes, I don't want to explain what Crohn's has taught me. I just wish I didn't have to deal with it. Those feelings don't erase how far I've come; they're just part of what living with a chronic illness looks like, too.
Now don't get me wrong: Crohn's disease has certainly taught me a lot about myself [5] and my body. But it will always be just one part of my story. I'm Lindsay: a loving, caring daughter, sister, and friend, with interests, relationships, goals, and a life beyond my diagnosis. Some things I may choose to share, while others I may want to keep private. Either way, I want to give myself the space to decide what feels right for me, in my own time.
My illness has changed me in many ways, and while some of those changes may bring growth, others are difficult. I can appreciate the good in my life while still making room for the things I struggle with, and sometimes, getting through a hard day is enough. I'm learning that my experience can be meaningful in its own way, even when I don't have the words to explain or a lesson to take from it.
If there's one thing I hope others living with chronic illness [6] take away from my experience, it's that we each get to decide what our story looks like. For some, sharing their journey can be empowering and inspirational, while also helping people in similar situations feel less alone. For others, like me, keeping certain aspects of life private feels more natural. There's no right way to navigate life with chronic illness, and I'm giving myself the grace to do it in whatever way feels right for me.
— As told to Andi Breitowich
Andi Breitowich [8] is a Chicago-based freelance writer and graduate from Emory University and Northwestern University's Medill School of Journalism. Her work has appeared in PS, Women's Health, Cosmopolitan, and elsewhere.