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What It’s Like To Live with UC as a Young Person

I don’t know if 35 years old still qualifies me as being a “young person,” but being diagnosed with ulcerative colitis (UC) at 14 years old sure does. Imagine sitting in a doctor’s office, barely able to function, and being the youngest one by an easy 50 years. There’s nothing relatable in that moment, especially for a young teenager who just wants to enjoy the ebbs and flows of high school. Instead, my world was riddled with confusion, exhaustion, loneliness, and embarrassment. I didn’t want to worry about pooping my pants while everyone else was dating and doing the sports they loved. I didn’t want to spend my free time getting colonoscopies while the rest of my friends enjoyed a post-practice In n Out burger. 

Don’t get me wrong: as soon as my gastroenterologist discovered that UC was responsible for months of pain, blood, and discomfort, I found relief within 72 hours of starting my medication. I was a lucky one. As soon as it was “treated” in that sense, it was more or less out of my brain as well. So I did get my dates and my burgers and my sports and my high school experience without so much as a blip of symptoms during those four years. Yes, I was lucky. 

However, what also came with that immediate relief was my lack of knowledge about UC, inflammatory bowel disease (IBD) as a whole, and just how much this condition would impact the rest of my entire life. As a young person, most of us understandably want or wanted a “normal” experience. Spending time in doctor’s offices surrounded by people five times our senior isn’t necessarily at the top of any teenager’s list. Neither is being proactive on reading up on IBD instead of meeting friends at the movies. I feel like that pretty much sums up life as a young person living with any chronic condition; it’s an irritating interruption rather than an opportunity to grow and understand our bodies. 

Plus, it’s really freaking lonely. High school, especially in the age of TikTok and Instagram, is a time where fitting in and being cool is a top priority for many. Some are navigating bullies, mental health struggles, and so many other pivotal coming-of-age moments. Toss in a random chronic condition that none of your friends have, and it’s just one more thing to stuff away and ignore in the hopes that it will just … disappear. At least that’s what I did. When you’re diagnosed young, it’s a lot of “you’re young, you’ll be fine” too – which isn’t exactly driving the point home to this is a forever thing. It’s easy to just shake it off and move on, until a flareup rears its ugly head. 

I’m forever grateful that many young people now have access to the Internet, social media, and other really quick ways to connect, get information, and find support through chronic illnesses. I didn’t have those in 2001. While the world wide web does come with its downfalls, it has also risen to the challenge of engaging young people just enough, in the right way, with the right content to help more of us find the resources we need. It shouldn’t fall on a person coming into their own to also understand a condition they’ll live with forever … all on their own. Support is key for everyone, especially our younger population. That’s why I share my story – in the hopes that at least one person seems themselves in it and realizes that life does flourish, even with a chronic condition like UC.

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