I Got Sick After an 11-Year Remission. Here's What I Learned.
Before this past spring, summer 2006 was the last time I was ever this sick. Between 2006 and 2018, I’d have “bad days,” but nothing that ever warranted more than taking it easy and waiting for it to pass.
All of that changed in April, when I noticed my bowel movements not looking right. Then there was blood. Then there was phantom urges to go. Then more blood. This wasn’t just something I ate, or a too-hard run, or a bad day of symptoms. This was a full-blown flare, and I was completely blindsided. After 11 years of an almost-perfect bill of health, I was ignorant enough to believe I was never going to flare up again. Never again. Between starting a new job, getting engaged and not putting myself first, it was a perform storm of good stress, bad anxiety, emotional avoidance and self-soothing. I believe that, combined with the sheer unpredictability of this disease that I totally underestimated, caused a rupture in my remission streak.
Now, as I seem to be coming out the other side of a painful summer, I look back on what these months taught me. I believe the body is a messenger; this belief brings me much peace in moments where I wanted to give up. And where there can be great physical agony, there is also an opportunity for emotional growth. With that, here’s what I took away from my biggest flare in years:
1. Treating the physical is important, but so is the emotional. Sure, the medications my gastroenterologist put me on did most of the work. But I also went back to therapy. I also joined a new group for support. I also faced a lot of distress I’d been avoiding my whole life. It lifted stress. It opened flood gates. It helped me to look inward for relief and pull the negative energy out of my gut. And it all worked.
2. Chronic conditions are just that — chronic. This doesn’t mean I’m going to live on guard for my next relapse, but it means I’m now conscious of its potential and armed with the right tools to get through it.
3. You can’t downplay the depression that comes with it. You’re trapped in your body, and the incessant questions about how long and what caused it from well-intended loved ones just twists the knife. Because you can’t answer them. Depression is lonely, it’s isolating, and it’s manipulative — always convincing you it’s not worth it. But it’s always worth it, and a flare is hardly ever a new normal.
4. Food has to do with it, but it’s not the only factor. One major thing I chose to do when I got sick was clean up my diet. Am I perfect? No. Do I still enjoy the gluten-free pizza? Absolutely. Like anything else, it’s all about balance, whether or not you have inflammatory bowel disease. Policing your diet or anyone else’s 24/7 won’t make you well, but being conscious of it can help.
5. Your doctor isn’t your top advocate — you are. I’m fortunate to have one of the best GIs in the business, but we did disagree on certain terms of my flare treatment. I put my foot down against a massive increase in a medication I did not want to take, and we agreed on an alternative. And now, three months later, I’m feeling great! Don’t be afraid to speak up; they have the medical degree, but you have the only first-hand knowledge of what your body can take.
6. Your support system is key. Join groups. Chat to The Mighty community. Text a friend who will help you through this. I 100 percent know the feeling of alone-ness, and I, too, had days where I literally ignored the world and cried alone in my room. But once you’re done crying, text or call someone and say you’re having a hard time. And no, they aren’t too busy to take your call, and no, you’re not a burden on anyone’s time.
7. Move more. This one is huge, although there was a time where I literally could not leave the house for more than a minute before running to the bathroom. But when you can…when you have an OK day, when your doctor clears you, walk to the mailbox. Do five jumping jacks. Go for a walk. Just move — exercise is such an integral part of good health. And when it comes to that feeling of “being trapped” in a body that doesn’t work, moving reminds you that you can do great things in your skin. It boosts my spirits because of that.
8. It’s OK to make jokes. Once I got a grasp on my life with colitis, it was easier to joke about it. When I got sick, that was temporarily suspended. But still, laughing off the hard stuff is sometimes the only thing to be done in that moment. When the misery sucks you too deep, crack a funny one, if even just to yourself.
9. It’s also OK to cry. Cry away! I will never understand why some people are scared to cry or show emotion, especially to themselves. Being stoic may help you through certain moments, but it won’t help you through the long-term. Facing those scary emotions does. I cry a lot, sometimes for no other reason than to just release negative energy.
10. Don’t give up on your dreams just because you got a thing. Is it important to make tweaks to your plans to best accommodate your disease? Absolutely. When I was barely able to go to work, I planned calls around the times I usually spent in the bathroom. I’ve delayed goal races to let my body fully heal before running my next marathon. Adjustments are vital, but giving up isn’t necessary. You can still pursue those goals, even if the timeline looks a little funky.
Getty photo by isaxar