The Mighty Logo

Ask Yourself This Question If You Worry That Your Life Revolves Around Your Illness

The most helpful emails in health
Browse our free newsletters

“You are not your disease.”

That’s something people like to say when you’re sick. And it’s true! It’s so true. You are not your disease. A diagnosis does not define your character. But sometimes when people say “you are not your disease,” what they really mean is “Please stop talking about your disease as it is making me uncomfortable and I would like to talk about more pleasant matters, like what happened last night on ‘The Bachelorette.’”

I am not my disease. I know this. But my disease does inform a lot of the things I do and feel, because of course. When you’re in pain or discomfort on a daily basis, it’s going to inform parts of you. When you can’t socialize with your friends because you’re having a terrible fatigue day, it’s going to affect you. Accepting that goes a long way toward stabilizing your mental health. But that’s all the disease is — a part of me. It defines me in the way that all of the other parts define me, both good and bad.

And in a flare like the present one, I do sometimes worry that my life revolves around my illness. My planner is full of doctor’s appointments, infusions and support groups. My social media posts look like the diary of a grandma who really likes to Instagram. I don’t have exciting weekend plans to contribute at the water cooler — just maybe a story about the movie I watched this weekend (which was ‘Beauty and the Beast,’ if you were wondering. It really holds up).

So today I got to thinking — Does your life center too much around your illness?  What’s your identity these days, aside from ‘sick girl?’ And here’s what I came up with. These are all (or some) of the things, aside from a Crohn’s disease diagnosis, that make me “me.”

I am a writer. This is central to my character and humanity. Even when I can’t get my life together long enough to be working on a legitimate project with any sort of discipline, I am always writing bits and pieces and notes and letters and blogs and first acts of plays I will never finish.

I am a cat mom. I have embraced cat-lady-dom in full force with my little Russian Blue, Alfie, and my roommate’s cat, Tiny. They make my days so much more adorable and sunshiney and even writing this makes me want to devolve into a pile of baby-talking, cat-toy-buying mush.

I am a compulsive reader. More detrimentally to my paycheck, I am a compulsive book-buyer. Everything from classics to modern lit to young adult fiction to beach reads to memoirs — I will read it. Bookstores and libraries house some of my favorite memories and generally make me feel safe.

I am a Taylor Swift super-fan. I know every word of every song by heart. Last summer I spent way too much of my disposable income to see her two nights in a row in Chicago. I grew up with her songs, and they will always hold a special place in my heart. I once had a Taylor Swift themed birthday party in which everyone was forcefully encouraged to dress up like her. She liked a picture of my birthday cake on Tumblr and I cried.

I am a political junkie. I am a lifelong Democrat who watches CNN for fun. I have a favorite political analyst (her name is Donna Brazile and she loves a sassy jacket). #ImWithHer, and I’ve got the T-shirt and button to prove it.

I’m a comedian, in whatever way you would like to take that. I have dabbled in every form of making people laugh, from stand up to web series to sketch writing and beyond. Making other people happy makes me happy, and making them laugh is the best way I know how to do that. (There is also, undeniably, a power aspect, as I am probably a tiny dictator of fun.)

I am a volunteer. I like to give time and effort to a cause. As a kid, this took the form of community service clubs and volunteer hours and the like. Now I like to support the causes of others, speak up about issues that mean something to me, and raise money for cool organizations I feel strongly about (like the Crohn’s and Colitis Foundation of America.)

I am a friend. I will give you advice when you think you want to dump your boyfriend. I will make you a sad songs mixtape when you do. I will mail you a happy gift when you’re stressed, or when you’ve accomplished something awesome. I will support your startups, your side hustles, your stories and your art. I will cheer you on forever. And even when I’m too sick to make it to your party, I will send you unending Snapchats of the aforementioned cat children (jury is still out on if this makes me a good friend or an annoying one, but hey.)

So that’s me. Sick girl, funny girl, obsessed-with-pop music and shirts with cats on them girl. If you’re chronically ill, I highly recommend this little activity of writing down who you are outside of your illness. Sometimes we all need a reminder that we don’t have to be just one thing, and we don’t have to fit into neat little boxes. I have a lot of messy, disorganized boxes, and those are pretty great as well.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 21, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home