Dating with a chronic illness taught me that I am more than my disease

After years of enduring dead-end doctor’s visits with the goal of treating my mystery health issues, a sudden acceleration of symptoms finally leads me to a diagnosis on a fateful day in July: Lyme disease (with co-infections). At the sickest I’d ever been and at the precipice of a grueling treatment regimen, I decide to—for the first time in my life—start dating with a chronic illness. Microbes and medications may be manipulating every part of my body, but I can still choose what I do with said body—and with whom.

The previous November, my nearly four-year relationship ended, so at age 25, I went to stay at my parents’ house for what was supposed to be a few weeks to recuperate. But as I became increasingly ill, weeks gave way to months. Finally in July, I receive my diagnosis, which comes with an unexpected dose of existential musings. The myriad health mysteries that dotted my years since childhood, like crippling leg pain and chronic nausea, suddenly added up: I realize my physical struggles are neither my body’s way of gaslighting me nor my fault.

In some ways, the epiphany is liberating, but I still felt beholden to side effects of all my medications. I’m compromised in my ability to work, exercise, socialize, travel, create, and eat most foods, which makes me realize how easily I could disappear into the layers of this illness. So armed with a brand-new zest for life and a fear of losing my enthusiasm for it, I download Tinder.

That’s how I meet the architect. When we sit down at the bar at 9 p.m., I have full intentions of launching into my prepared speech that starts with, “I can’t drink because I’m taking antibiotics for Lyme disease…” but it gets garbled with shyness. I’m afraid he’ll run away when he learns that I am sick. Instead, he expresses brief sympathy and orders me a hard cider. (Note to self: Being sick? Apparently not a deal-breaker, but I need to speak up more clearly about the sobriety part.) The experience ends up being a pleasant surprise of engaging conversation and undeniable chemistry, and I’m left feeling smart in my choice to have at it despite my low-grade fever.

Lyme disease forces me to embrace spontaneity in favor of my preferred mode of advance planning. Ultimately this boosts my confidence after each successive date assures me that being sick isn’t a problem.

In the first few months of casual dating—emphasis on the necessity of “casual,” given the precarious state of my health—Lyme forces me out of my comfort zone. I have to embrace spontaneity in favor of my preferred mode of advance planning, thanks to dealing with a condition that changes so dramatically from day to day. Ultimately this only boosts my confidence after each successive date assures me that being sick isn’t a problem. Still, I have to very clearly communicate my limitations about not eating carbs, dairy, fruit, legumes, alcohol, or sugar—but if I don’t make a big deal of these things, my date doesn’t either.

But that winter, my Lyme takes a turn for the worse, and I fall into a heavy cement fog. With leaden limbs and a brain that feels about as intellectual as a bowling ball, I stop looking for dates on Tinder. But life is funny, and off the app, a date finds me at a volunteer Halloween event. In the days and weeks that follow, I chat with the chicken farmer over Facebook and ultimately invite him over for dinner. Since the food, noise-level, and smells that come with going out somewhere in public are too unpredictable for my body these days, controlling the environment in my own home—though an undeniably bold first-date move—provides me some control. We also have enough mutual friends for me to feel safe bringing him to my home. (And, hey, he didn’t complain about the prospect of a home-cooked meal.)

Just like the Tinder date led me to access an unknown aspect of myself, so too does this man. I feel that forgotten sensation of butterflies when our wool-socked feet accidentally touch during dinner. In that moment, I wonder how I can simultaneously feel so nauseous and smitten; capable of passion and care for another person despite feeling like a sick zombie. Clearly, somewhere within, there’s a regular, young, red-blooded human hungry for life and connection.

I wonder how I can simultaneously feel so nauseous and smitten. Clearly, somewhere within, there’s a regular, young, red-blooded human hungry for life and connection.

Of course, I commit the cardinal sin of dating with a chronic illness by overdoing it both emotionally and energetically. As soon as my body gives me a spark of life, I pour everything I have into the fire of my budding romance. Though the chicken farmer is set to eventually move states away for his work, I accept his dates and grow attached. Our last night together is near freezing (the temperature drops to about 35 degrees), and while cuddling in a paper-thin farm shed under three-quarter moon is totally romantic, in the early-morning thaw, I feel awful: Heartsick and plain-old sick sick. The combination of being cold for an extended period of time, plus lack of sleep, and stress derived from the emotional sadness of being forced to say goodbye does a number on my body, leaving me sore, nauseous, and fatigued.

But with summer around the corner, I am determined to be well again, so I start swiping on Bumble. Enter the sailor. Tattooed, well-groomed, and downright sexy, he slips easily into my part-time workweek. I, again, get more than I bargain for.

Being with the sailor makes me feel normal. His rigorous schedule helps us find hobbies in common, namely napping, eating, cuddling, and sleeping. It seems I’ve finally found someone who wants to rest as much as I do. I grow attached, but soon start struggling with new medication side effects and depression. I begin to depend on the sailor for things that I can’t seem to produce myself: validation, self-worth, and spontaneity. He ultimately fades from my life, and though parting with a summer fling come fall feels like an inevitable trope, losing the only part of my life that feels fun, vibrant, and young is nonetheless gutting. Something needs to change.

Dating gave me an escape from illness, a chance to channel the high-functioning, creative, energetic, young person I so longed to be.

I stop taking pharmaceuticals and switch to a flower-essence protocol, and it seems to be effective: My illness subsides, along with the worst of my symptoms. And though I’m feeling better health-wise, a few exhausting first dates leads me to stop trying altogether.

The nearly two-year dating experiment was as much a part of my treatment as the medications. Not because it helped boost my immune system or kill pathogens, but because of what it afforded me. Dating gave me an escape from illness, a chance to channel the high-functioning, creative, energetic, young person I so longed to be. The people I met exposed me to fascinating ideas, kept me curious, and gave me a sense of belonging in a world that felt like it had forgotten me.

Still, the dates didn’t yield what I now need most: confidence, security, independence, and true ownership of my body. Dating apps can facilitate a dependence on matches for validation, excitement, and self-worth. That can be unhealthy for anyone, but especially so when energy itself is hard to come by and maintaining physical stability and immune strength is a full-time job.

Now, after focusing on escaping my circumstances via dating, I’m learning to accept the ups and downs that come with chronic illness. Dating is great for meeting new people, but I was using it as a vehicle to escape the most difficult time in my life. I no longer want to escape, though. Maybe I’ll date again, but for now, I feel fortunate to be reunited with some of the things that I thought were gone from my life forever: dance, work, friends, and carbs. All of those things provide me with all the partnership and support I need right now.

Beyond dating with a chronic illness, here’s how struggling with one can impact your social life. Pluse, here’s how sharing old photos helped one advocate change how she felt about her chronic illness.