How the kink community helped me confront unsafe patterns and foster empowering sexual connections.

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When you spend every day in pain, eventually you end up talking — or at least thinking — about chronic pain and sex.

This doesn’t necessarily mean combining the two intentionally (although some people with chronic pain may choose to) but about how to identify as a sexual person and not have that identity taken away by the presence of pain.

Like a number of people with chronic pain conditions, I have a history of mental illness and trauma. Trauma is highly correlated with pain conditions.

According to the Institute of Chronic Pain, people living with conditions including arthritis, fibromyalgia, and chronic migraine, report traumatic experiences at higher rates than the general population.

A 2005 study found that women who were survivors of sexual assault were over 3 times as likely to have fibromyalgia (the condition I was diagnosed with in 2010) than women who have not experienced assault.

I was sexually active for about 8 years before I received my first chronic pain diagnosis, but I had been experiencing symptoms for nearly the entire time. I got used to not just being in pain, but also keeping that pain a secret.

People with invisible disabilities — those of us who don’t look sick — often become experts in hiding our symptoms. We may do this for a number of reasons: to avoid discrimination, to keep a job, to get a break from explaining a diagnosis, or just to avoid having to justify invisible symptoms.

Hiding the amount of pain I was in became part of every aspect of my life — including my sex life.

With new partners, it didn’t feel worth the hassle to explain why I was sensitive to certain types of touch. With longer-term partners, PTSD often kept me from speaking up about my needs and boundaries in order to try and keep my partners happy.

When I was in a long-term relationship, I started seeing a therapist to address the shame and guilt I’d internalized around putting my own needs first. I was still struggling to openly tell my partner when my body was hitting a wall and I needed to tap out.

In any (good) kink community, you’ll hear three words repeated like a mantra: safe, sane, and consensual.

Active, affirmative consent is the cornerstone of kink: nothing is taken for granted, nothing is assumed, scenes are negotiated, and nothing starts or continues without active consent from all parties involved.

I was introduced to kink as a community — rather than simply as a practice — during a sex educator training in college. In graduate school, I learned about the deeper ethics of BDSM while doing research for a project.

In recent years, the conversations around sex, disability, and kink have drifted away from kink-only online forums and into more mainstream publications. This has opened up new avenues for people like me living with chronic pain conditions.

I’ve learned not only about the pain-by-choice framework of kink practice, but also how the principles of affirmative consent can be applied to any relationship. This is absolutely critical for people coming into the bedroom (or the living room, or the shower, or… well, wherever?) already in pain.

“The control-centered expectations of kink can help disabled people ground within their bodies,” Emmett Patterson, a queer, trans, and disabled health activist, wrote in an article exploring chronic pain and kink.

Conducting interviews with disabled kinksters and experts in the field of sexuality and disability, he found that his conversations often centered around kink practices like the stoplight system for consent and control.

He learned how many of these practices have allowed people with chronic pain to reclaim feelings of intimacy, safety, and trust — not just with their partners, but with their own bodies.

Despite years of incorporating affirmative consent practices into the fiction I was writing, and in my work as an advocate and educator, I still struggled to voice my limits in my own bed.

I never pushed myself to the point of self-injury or severely worsening my pain, but I certainly found myself at the edge of discomfort — both physically and emotionally. My PTSD was making me feel like my partner would be hurt or upset if I tapped out of sex.

Even though I knew this intellectually, it didn’t actually make it any easier to start voicing my needs.

It wasn’t my first diagnosis, of PTSD, or my second, of fibromyalgia, that made me start taking consent and communication seriously. It was my third: a diagnosis of chronic migraine.

I had been experiencing migraine episodes for over a decade, but my diagnosis came after several years of increasingly intense and frequent episodes.

The symptoms that came with migraine — light sensitivity, sound sensitivity, nausea, and a skin sensitivity that made my fibromyalgia flares look like casual discomfort — forced me to finally confront my habit of hiding my pain and sensitivity from my partners.

It says something about my mental health at the time that I was more anxious to admit I was in pain because of how it would affect my sex life than I was about what this new diagnosis might mean for any other aspect of my life.

I was afraid to tell my partner that I didn’t think I’d be able to have sex as frequently as I wished we could, and I worried about what that would mean for our relationship.

I turned to an article I’d first come across during my research. The article reminded me that by not being open about what I was feeling during sex, I was taking away my partner’s ability to fully consent.

While the potential risks of not communicating are often made more obvious in a kink scene, the practice of actively communicating with one’s partner — particularly about when you’re not having fun anymore — should be the default.

The impulse to hide pain or discomfort during sex is, I suspect, similar in some ways to the impulse some people have to fake orgasms. We are motivated by the same desire to avoid making our partners feel undesired or rejected, and we don’t want to hurt anyone’s feelings.

Similar to how not faking orgasms is a step toward better communication and better sex, being honest with my partner about my pain levels — before, during, and after sex — has helped me feel safer and more comfortable.

I have become more comfortable speaking up regardless of whether I’m saying no, or not right now, or what about this, instead?

Just as importantly, this type of honesty has made it easier for my partner to trust me.

I know that I’m only doing something because I actively want to and feel up to it, not because I’m worried about causing a problem between us if I don’t.

Communication is critical in any sexual space, whether or not it involves pain (intentional or chronic), power dynamics, or trauma histories.

A good therapist can be a great source for tips on communicating in sexual relationships — but don’t rule out your local kink community, either.

The kink community knows what they’re talking about when it comes to talking honestly about sex and your body’s needs — and how to find sparks of pleasure when navigating pain.


Shelly Jay Shore (she/they) is a writer and digital strategist in New York/Colonized Lenapehoking. Her creative fiction and nonfiction celebrates diverse characters and perspectives, and her activism centers on expanding civic engagement and social justice. In her limited free time, Shelly reads a truly alarming number of books, experiments with home bartending, wrestles with her dogs, and attempts to raise a functioning human being who will only need the normal amount of therapy. Find her on Twitter and Instagram.