I was flanked on both sides by two Navy Corpsmen, a third one carrying half my body weight with the harness wrapped around my waist. They were helping me do my daily walk around the 4 North East ward. I was in the hospital for the second time that year and was the sickest, weakest and in the most pain I’d ever been. All my mom could think about was making sure the wheelchair trailing behind me would catch me if I fainted or fell, but all I could think about was how this was the closest I’d been to cute guys in months.
Being a young person with chronic illness is a very isolating experience. In a life often totally consumed with keeping track of meds, managing your pain, staying on top of doctors appointments, procedures and infusions, staying sane and afloat is pretty much Oscar worthy. So how am I supposed to find time to meet people my own age or date?
I was terrified of becoming a Carrie and Big love story — a romance that took 10 years of agonizing back-and-forth and relationship games, only for them to end up together in the end. As a chronically ill person, that literally sounds like my worst nightmare; I don’t have the time or energy to do months of back-and-forth or play games — all that energy goes to keeping this sexy vessel healthy and upright.
The pandemic was tragic for innumerable reasons, but one upside was that everyone turned to online dating. I’d never considered online dating before because I’m a classic gal who prefers a romantic chance encounter. However, the older I get, the more I realize that’s a movie magic lie, and at this point, I’ve been through hell and back with my health, and I’ve got nothing to lose.
When going to create my Tinder and Hinge profiles, I immediately hit a brick wall. I was trying to find cute pictures for my profile, but the only pictures on my camera roll from the past two years were either of me in the hospital with bags under my eyes giving a sarcastic thumbs up, or of me looking very scraggly because I hadn’t had the energy to shower for days. The only viable pictures I had were from my sophomore year of college, and it felt wrong to use those because that isn’t the person I am now. Then came the second brick wall: writing my bio.
Catherine. 22. Loves the beach. Lives with debilitating chronic pain and may need to bring ice packs on date.
No, definitely not that.
Catherine. 22. Loves dogs. Will need to premedicate for any activity longer than an hour.
Catherine. 22. No, I don’t care how big a fish you caught or what kind of car you have. Yes, shower sex is an option as long as you’re cool with a shower chair.
Catherine. 22. Has tubes coming out of her arm, but don’t worry, they won’t get tangled if we make out.
Catherine. 22. Doesn’t do drugs — only prescription ketamine for high pain days, and no, I won’t share.
Catherine. 22. Her body doesn’t work, but it might for you?
I got frustrated pretty quickly with the process. Though after a while, I realized why nothing I wrote felt accurate enough. I don’t even have the words to describe what I’ve been through, so how am I supposed to distill it down for someone I’m meeting for the first time?
I ended up going on a few (socially distanced or virtual) dates, and they were actually really fun. Sometimes my health came up, sometimes it didn’t. I did my best to let conversation flow naturally and I knew that being honest would not only leave me feeling good about speaking my truth, but sometimes my date could actually relate to some of things I’ve been through with my health, and that always led to us getting to know each other better.
Finding the words to describe my lived experience has become easier with practice. Ultimately, I realized that dating itself isn’t what scares me (because to be honest, I know I’m an absolute fire date, and I find meeting new people really exciting).
What scares me is something I think a lot of people living with chronic health conditions fear: compassion fatigue. I had, and still sometimes have, a real fear that letting someone into my world of needles, meds and daily pain will freak them out, or they’ll think it’s “too much.” I had a deep fear that if I’m upfront and truly honest about my lived experience, it might turn a friend or romantic partner off. Although I no longer feel that way, working through that fear took a long time.
Now, I can confidently say there is no magical formula to navigate the conversation of my health journey with someone I’m interested in romantically. There’s no “10 Steps on How to Love Someone With Chronic Illness.” That’s some Cosmopolitan advertising BS.
In reality, chronic illness doesn’t mean the end of dating. It means the start of dating in a new way where I am not defined by my health conditions. Yes, they are a huge part of my lived experience, and living with them has taught me so much about life, but I am not Lupus. I am not POTS. I am not IgG2 Sub Class Immune Deficiency. I am not Migraine. I am Catherine — student, singer, dancer, best friend, daughter, columnist, activist, advocate, tutor and so much more — living alongside chronic illness and all the more fabulous because of it.
Catherine. 22. Bad bitch.
Yeah, that’s definitely it.
Writer’s note: Feel free to reach out to Chronically Catherine if you’re also a student of different abilities working to coexist with daily adversity without losing sight of your fabulosity – email@example.com or @itschronicallycatherine on Instagram.
Catherine Ames is a junior writing about life as a young person coexisting with chronic illness. Her column, “Chronically Catherine,” runs every other Friday.