Just like how I knew nothing about queer sex until I started having it, I knew nothing about having sex as a spoonie—someone living with chronic pain—until I became one. I couldn’t imagine either of these realities, because when I looked around as a child and teen, I never saw it. I had to invent my own sex as I went.
The first time I had sex with another spoonie, my body was a nightmare. I’d been run over by a car three years prior, and after surgery I learned not only would I have to relearn to walk, but I would also be in pain for the rest of my life. We’d been roadtripping throughout the U.S. for weeks and I was sore, exhausted, and freezing. My lover laid me down next to our small, West Virginia fire and asked if I wanted to have sex. She had broad shoulders, rods in her back, and a shaved head. “Yes,” I said.
During, I asked her to hit me. Hard. She took heated stones from the fire and burned me. She pulled my hair and held my face to the dirt. She worked her hands inside me like a puzzle. I begged for it harder and rougher, and she responded—everything informed by the many in-depth conversations we had about our boundaries, desires, and safe words beforehand. With our breath steamy in the cold air, I decided to be in pain. It was my choice, and that choice was a revelation: The reclamation of my pain made into pleasure also meant feeling autonomy within it.
When I Googled “chronic pain and sex” this morning, the Mayo Clinic told me that when “chronic pain invades your life, the pleasures of sexuality often disappear.” It says I can find my sexuality again in spite of chronic pain. That's the common tone and logic in most mainstream information about chronic pain: that it's something to conquer or work against.
But what if I connect best with my body because of that pain? Despite what Mayo Clinic tells me—and despite the desexualization of disabled people, in general—pain hasn’t disappeared my pleasure or invaded my life. I do not overcome or manage my pain in the hopes of “reigniting” pleasurable sex or a connection to my body. My intense, chronic pain guides me towards queerer, kinkier, and more intimate sex—so I follow that pain willingly.
I was not always a spoonie (a term coined by Christine Mierandino, the award-winning writer and lupus patient advocate). I was able-bodied until I was 21 years old. I went from being an athlete to a college dropout living with her parents, unable to walk or use the bathroom unsupervised. I was ashamed and depressed. I barely left my room or spoke. I slept and woke in the dark. I watched 22 seasons of Law and Order: SVU in six weeks. I remember little else except my crush on Olivia Benson and the intense pain and grief shredding my body.
Then a friend gave me a copy of Eli Clare’s Brilliant Imperfection and I finally stopped watching Law and Order. Clare is a poet, disability scholar, and trans memoirist. In Brilliant Imperfection, Clare dives into the medicalization of disability and our society’s obsession with cures—with eradicating and disappearing disability—as it relates to gender transition, sexuality, taking disabled and abled lovers, and the makings of queer, crip-positive sex. He wrote, “What might happen if we were to accept, claim, embrace our brokenness?” The book wasn’t a how-to on overcoming grief and injury. It was permission to be who the accident made me: a disabled dyke. It was a permission to rage against the abelist and lesbiphobic shame I’d internalized. Clare was the only person who told me my worth was not dependent on my ability to get better or to disappear my pain. I cried as I read and re-read.
Months later, I learned to walk again. A month after that, I met my girlfriend. On our first date, they observed my limp and wordlessly slowed their pace. We had sex that night, and as I would each time in the first year of our relationship, I cried in spurts both during and after sex. “You’re safe,” they told me. “I’m not going anywhere.” In my girlfriend’s arms, I realized queerness had prepared me for illness: This was exactly what my lovers and mentors has said to me during my very tumultuous coming out. As other friends dropped away after I came out and eventually became disabled, a legion of lesbian and queer women rallied around me at my weakest, adjusting their steps to walk alongside me.
In ongoing recovery, I cultivate a strong sense of entitlement to finding pleasure in my body through good sex, which, for me, now requires creativity; wildness; and subverting and enjoying the seedy, marginalized attitudes toward sex that both my lesbianism and chronic pain taught me. Pain is my jailbreak from convention—the gateway to the queerest, hottest, and most intense sex I can have.
Unlike many others whose chronic pain has no sudden catalyst, for me there will always be a “before” and “after” to frame my life and relationship to sex. When I compare my life before and after my accident, I appreciate the connected ways chronic pain deepens and expands the sex I share with others. During sex, my head used to spin from performance anxiety: How does this feel for them? Am I doing this right? Pleasure came from the relief that sex was over, or that my partner was satisfied, not from the act itself.
Because of chronic pain, I now feel everything—physically, emotionally, and otherwise—through the core of my body. Chronic pain quiets my mind, offering me wider physical and sensual opportunities. These opportunities look like bottoming. Like being a pillow princess. Like bratty demands and, occasionally, absolute submission to my partners. Before, I thought bottoming would make me too vulnerable, that making requests for certain acts was selfish, and that my kinks were embarrassing. Now, because my mind is quieter, submission allows me an intense, prolonged focus on my body and what turns me on. Pain transformed my pleasure from background to foreground. That feels like healing.
For me, ideal sex is always a shout of fuck you to the forces that keep queer spoonies like me down and out and in spite of. Chronic pain never meant the end of my sensuality, but its expansion into queerer, stranger, and more complicated modes. Alongside the forced expansion of my pain tolerance, I found a deep well of gratitude for my body’s capacity to feel. Without chronic pain, I may have never found that fresh water.
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This article originally appeared on VICE US.