How Dating With a Chronic Illness Taught Me Not to Settle for Less

Caroline Reilly
·10 min read

Antonio Rodriguez/Adobe Stock

When I was diagnosed with endometriosis nearly a decade ago, a lot about my life was changing. The mysterious pelvic pain and excruciating periods that I’d quietly lived with for years had become unbearable and debilitating. The stomach problems I’d always chalked up to a weak digestive system became more extreme, sending me to the bathroom upwards of 15 times in a span of a few hours. Once a doctor mentioned endometriosis to me, I faced a torrent of appointments, surgeries, and ER visits. I was navigating work and school in a body that was fighting me tooth and nail—even the way I dressed had to change.

My romantic life was also turned upside down. At first, I didn’t know how the hell to go about dating and sex. I tried a lot of different approaches in a desperate—and often haphazard—attempt to reconcile my identity as a woman with endo with my life as someone who wanted to go out with cute guys, experience physical pleasure, and be loved.

Throughout my 20s, I indiscriminately glommed onto the attention of any man who would have me—and, conversely, went through periods where even the thought of men repulsed me. I’ve had casual sexting rosters bigger than my number of unread emails, but then there was also the time I was all but certain I met the love of my life. (We don’t have to get into this now, but…he wasn’t.) I even had a long-distance tryst with a man in Switzerland after setting my Hinge location there, thinking it was Scandinavia, where my favorite books take place (a lesson in love and geography). It was like going through the five stages of grief, but for my vagina: I was desperate to regain some sense of control and some sense of self.

Throughout these experiences, I had so many questions: “When do I tell the guy I’m dating? Do I have to warn him about it? What if he’s turned off?” After my diagnosis, I learned that when you live with a chronic illness that affects your reproductive and sexual health, it’s easy to feel obligated to offer a disclaimer to your partners. These illnesses share so much space with the parts of life that romantic relationships do: sex, fertility, family. It can seem like you have to walk into a date wearing a sign that says, “SOMETIMES PENETRATION HURTS,” or, “I MIGHT NOT BE ABLE TO GET PREGNANT ONE DAY.”

There were some things I was already used to working around—or figuring out how to conceal. When I got my diagnosis at 23 years old, I knew nothing but painful sex: I’d grown accustomed to white-knuckling my way through intercourse, masking screams of pain with feigned moans of pleasure and making excuses for why I bled profusely sometimes after penetration (“Sorry, my period must have started early!”).

Reproductive health is mired in so much stigma that it feels brave and subversive to speak openly about it, and, to be sure, it is. So when I found a name for my condition, I told myself that by not sharing my endometriosis, I was capitulating to the notion that it’s shameful or unsexy. And there was a lot I couldn’t hide: My abdomen was covered in scarring and heating pad burns, which are hard to ignore when you’re standing naked in front of another person. Then there were the day-to-day realities of living with endo, like an unexpected flare getting in the way of a much-anticipated date night, or feeling disappointed when I told prospective partners no, I really did not want to go on a 10-mile hike as a first hang.

I was so afraid of partners rejecting me for having endometriosis that dating turned into an exercise in exposure therapy: pushing myself to talk about my condition before I was truly ready. I wanted to prove to myself I wasn’t ashamed—and to vet my partners by seeing how well they handled it.

I had my fair share of grotesque comments lobbed at me along the way: “Well, it’s not like I want to put a baby in you.” “I was worried you’d be weak sexually.” “Does this mean we can’t have quickies?” Other times, it felt like men replaced genuine care and thoughtfulness with being overly effusive or empathetic about my endometriosis—like an easy, one-and-done way to signal, “I’m a good guy.” And men are so shit that, for a while, I put anyone who offered me even a modicum of kindness on a pedestal, thinking, “Sure, he doesn’t make time for me—but he’s so kind about my endo! No, he never brings me flowers, but he doesn’t get disappointed when I have a flare!” I used the way a man reacted to my endometriosis as the only barometer of our compatibility. I felt like it was the best I deserved.

I started to realize that by centering endometriosis in my approach to dating, I wasn’t being more discerning in my choice of partner. I was lowering my standards and robbing myself of all the other warm and fuzzy things I wanted in relationships. I realized that the impetus to oh so valiantly share my story had morphed into this sense of obligatory disclosure—this heaviness that clung to every part of my life, an identity that entered the room before me.

None of this happened in a vacuum. The stigma around chronic illness, disability, and romantic partnership is reinforced by our wider culture and society. In TV, movies, literature, and entertainment more broadly, sick and disabled women are drastically underrepresented. In real life, women with disabilities are at a greater risk of experiencing intimate partner violence and psychological abuse.

I often think about Padma Lakshmi, who wrote in the forward of her memoir, Love, Loss, and What We Ate, that her then husband, Salman Rushdie, called her a “bad investment” because she lives with endometriosis and couldn’t always have sex in the way he wanted to. Bile rose in the back of my throat when I first read that, and fear. Was I going to be seen as a bad investment too?

That’s what dating with a chronic illness can do to you—it makes you feel like you’re damaged goods. Therefore, I got “endometriosis goggles” when anyone loved me for “who I was” (a.k.a. someone with a long-term health condition)—I saw them as this rarified commodity because of their tolerance for the parts of me that made me feel insecure.

But whether it’s endometriosis or some other trauma or hardship, these aren’t things to tolerate. They’re things to embrace—parts of you that make you strong and resilient, and parts of you that are just that: parts, with a lot of other parts that are just as important and in need of care. And there are just basic things—namely, respect, boundaries, and kindness—that everyone should expect from a partner or a date.

Dating with endometriosis taught me the hard way: There’s no way of disclosing—or assessing someone’s surface-level response to—a complicated or painful experience that will make an uncaring or incompatible person better for you. Sure, the men who made abhorrent comments about my sexual prowess or reproductive capabilities were pretty easy to weed out, but even with the “understanding” guys, I ran into issues that had nothing to do with endo.

I’ve had partners who doted on me, sending me endless texts about plans to rub my back and run me a bath—ones who researched endometriosis and read every article I’ve ever written. They turned out to be assholes regardless. They were apathetic and exhausting in different but equally important ways: Sometimes it was just the general thoughtlessness of coming second to everything else in their lives, like friends, travel, or family. Often it was feeling like a receptacle for their stress at work—with a few guys, I spent hours on the phone drowning in the volatility and malaise on the other end of the line. Then there was just the run-of-the-mill male toxicity, like rough hands in bed leaving bruises that I never asked for, or degrading comments about my body or other women. I would have learned that about these people whether or not I disclosed my illness right away.

I’ve talked to women over the years who swear they have dating with endometriosis figured out. They say to date a person who is also disabled; tell them right away so they know what they’re getting into; look for someone who’s been through something hard in their life. I’ve heard all the arguments, like that if someone can’t love you at your worst, they can’t love you at all. But who says endo is my worst? (My worst is actually when I run out of Diet Coke and I don’t have any Bravo to catch up on.) The truth is, there’s no formula to find a perfect partner for someone with endometriosis—or anyone, for that matter—and certainly no formula where disclosing parts of yourself before you’re ready increases your shot at happiness.

I’m 30 years old now, and I’ve learned one important lesson through it all: Dating with endometriosis shouldn’t be different from dating without it. For plenty of people, sex is more than in-out, repeat if necessary; adoption and infertility care are part of so many family’s stories, not just ones with endo in them. And if I’m being honest, even if I had the physical faculty to go on a 10-mile hike, I wouldn’t be caught dead doing that.

Life comes for everyone. Everyone has a dark cloud lingering somewhere above them—maybe it’s in their periphery, maybe it’s right over their head. That doesn’t mean you have to forgo the frivolity and levity of getting to know a new love interest; of exchanging sultry touches in dimly lit bars and doing the crossword puzzle wrapped up in a duvet. There are topics that are totally fine to leave off the table when you first meet someone—and a million reasons why you might not feel comfortable talking about sex or starting a family over a drink.

I’ve been thinking about what dating looked like before my diagnosis, and while you couldn’t pay me to go back to my early 20s and the men I knew then, there’s a part of me that’s nostalgic for my biggest worry being if my lingerie matched, or if my perfume was overpowering. I’m learning to strike a balance. There’s no escaping what endometriosis has put me through, but I’ve worked hard to learn to live with it—to manage my pain, to enjoy sex, to find inside me that college girl who never once questioned if a man would say yes to a date.

Just a few years ago, my attitude toward love was, I have endo—here are all the reasons that makes dating different for me! Now it goes, I have endo—here are all the reasons that doesn’t change the way I date, because I’m a human being like everyone else, and also very hot! It’s not that I’m ashamed of my endometriosis, or that I’ve decided to start hiding it, but I’ve stopped opening with it or broaching endo like I have to justify why I’m worthy of dating despite it.

In the process, I’m learning to see myself as whole: the books I read, the work I do, the family and friends that I love, and yes, how good my cleavage looks in my dress are all as much a part of me as my endometriosis. And as it turns out, I’m also learning that all these things make for great first-date fodder too.

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Originally Appeared on SELF