2001. That seems so long ago — 20 years to be exact! — but at the same time, it feels like just yesterday. In fact, I was just talking to my mom about pediatricians, and she shared her favorite story about my own doctor when I was young. It was the day I finally admitted that I was seeing blood in my stool, and my pediatrician marched over to the nearby gastroenterologist’s office and demanded he see her “14-year-old patient” right away. One sigmoidoscopy and colonoscopy later, I heard the word “ulcerative colitis” for the first time.
Looking back on the last 20 years, I could easily spout off some of the toughest moments regarding my health. If you live with inflammatory bowel disease, you’re probably already familiar with them. Moon face, sleepless nights, intense appetites, and uncontrollable emotions from steroids. Major blood and weight loss from flaring. Embarrassment from accidents. Lack of support from peers. Confusion, anger, exhaustion, denial, resentment, and all the other things about being diagnosed with ulcerative colitis (UC). Mental health struggles around body image, anxiety, and depression. With the exception of a full hospitalization and surgery, my experience with colitis has run the gamut over the last two decades. However, I do consider myself extremely fortunate to have lived with a moderate case; I’ve seen the worst that can happen with inflammatory bowel disease (IBD), and my heart goes out to everyone affected by a severe course of illness. You’re the true heroes.
But no matter what we think about the relative severity of our condition, we all deserve love and support. That’s why I wanted to provide 20 simple, quick, maybe somewhat comical lessons I’ve learned over the last 20 years — all of which brought me to where I am today: acceptance. If you’re seeking your own acceptance, I hope these lessons bring you some solace in that search.
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- Ulcerative colitis takes on many forms. I had two major flares over the last 20 years, and both manifested in completely different ways in my gut.
- Giving yourself grace is the most important. When you’re having a hard day, grace is the best thing you can offer yourself. It’s OK not to do the thing you feel like you have to do.
- Your GI should be an ally, not an enemy. If you’re fighting to be heard, valued, and understood in the doctor’s office, it’s time for a new doctor. While they’re the “medical experts,” you’re the expert of your own experience.
- Don’t overlook the mental health of it all. This one snuck up on me as late as 2018, when I was flaring and at a loss of what to do. Once I took a look in the mirror and got real help for my depression and anxiety, things started to feel better.
- It’s OK to cry, and it’s also OK to laugh. A chronic illness is just that — chronic. We might as well find humor in things where and when we can.
- A support system is non-negotiable. Find your people, the ones who are here for the poop talk, and keep them around.
- No, you’re not being dramatic. Some days are just hard, and it’s OK to cancel plans, or say “no,” or stay in bed longer, or spend the day in the bathtub with bubbles.
- Don’t skip the research. I get it; there’s so much out there, and it can feel overwhelming and scary. Start with some basics, like Googling “What is IBD?” Or check out The Mighty’s Ulcerative Colitis Condition Guide for an easy-to-digest how-to with UC.
- Exercise is key. At least for me, it was and is. When you’re flaring or feeling under the weather, adjust accordingly. But overall, devise an exercise plan that works for your ability level and lifestyle. Exercise is a great way to show yourself that your body can do hard things.
- Celebrate the tiniest of moments. When I was recovering from my first flare in 2007, you bet your IBD butt that I had a party about being able to walk to the mailbox and back.
- Find your own tricks of the trade. Need some inspiration? My favorite ones include: keeping toilet paper in the car, mapping runs and walks around bathrooms, “trying” every time I see a toilet, and never eating anything new before a flight.
- On that note, always take the aisle seat.
- Be optimistic but realistic. Blind optimism, or the “Pollyanna complex,” aren’t really my jam. It encourages a “happy at all costs” attitude. Instead, I choose to be optimistic while being realistic because realism is really a chronic illness superpower.
- Just fart. You’ll feel better.
- Pick a really good, binge-worthy show. When I was sick in 2007, I watched every. Single. Episode. of CSI: Las Vegas. Gil Grissom truly got me through that tough time.
- There’s no shame in baby wipes. Heck, I use them even when I’m in remission.
- It’s not your fault. I’ve lost count of people who love to ask, “Well, what’s your diet?” or “Maybe it’s because of this food.” While nutrition is definitely important when it comes to managing any disease (or just living healthily), having indulgences and allowing yourself to enjoy all kinds of food isn’t the reason you live with IBD.
- Find a therapist. I cannot emphasize this enough. I do know that having the means for regular therapy can often be difficult for everyone. If you don’t have those means, I actually find a lot of comfort in mental health Instagram accounts, and The Mighty app has a really engaged community of people living with all different types of chronic illnesses. In addition, there are often support groups on the Crohn’s and Colitis Foundation’s website.
- Remember that you’re still you. You are not inflammatory bowel disease; it’s simply something you live with. You’re still all the other amazing, beautiful parts of yourself. Quick — name three traits that you love about yourself!
- Don’t stop planning — and living — your life. Take that trip. Move to that new city. Take that dream job. Quit that horrible job. Go on the blind date. Do the five-day hike. Buy the brand-new car. Living with IBD can call for some extra adjustments, but it’s not a calling to avoid those dreams of yours. Just pack some extra toilet paper!
What would you add to the list?
I was diagnosed with ulcerative colitis when I was 14 years old. Since then I’ve had two major flareups but have spent the majority of my time in remission. In July 2020, I made the great-for-me choice of going on anti-depressants, which has changed my life. My passion in life is to remove all stigmas around invisible illnesses and to empower patients to advocate for themselves and not live in any sort of victim mentality regarding their bodies and illnesses. They are part of who you are, not all of who you are. In my free time I enjoy spending time with my husband and friends, swimming, working out, reading and exploring new coffee shops. I’m also the new group leader for the Crohn’s and Colitis Support group here! I'm exploring that sober life too, one day at a time. 7/5/2020
caitlyn_smith