Updated: Nov 15, 2022
Oh, hey. How are you? Are you having a good day today? I figured I should start with something friendly considering I am about to tell you excessive details about my sex life. It only felt right.
Let’s start with some good ol’ disclaimers, just to make sure we’re on the same page. Sex is an incredibly personal thing, and personalized sexual health and wellness should be considered whenever there’s sex-talk involved. Do what’s right for you – period. Also, I am only one person with my own experiences with sex, disability, and chronic pain, so I’m here to share my story, not write the rulebook. Sex, disability, and chronic pain each have their own intricate intersectionality and those differences between people, experiences, and feelings should always be recognized and respected. I will stand for nothing less, got it?
Now let’s get to the good stuff. I am a 24-year-old cisgender lesbian woman with a chronic pain condition called Ehlers Danlos Syndrome. I was diagnosed at 14 years old, and at the time, I was not sexually active, in fact, I hadn’t even had my first kiss. I didn’t know that my future involved a lot of internal dialogue about how my chronic pain would affect intimacy in my life.
My relationship with sex as a person with a chronic pain disability has been… hard. There’s no other good word for it. The nuances of sex combined with the everyday battle of chronic pain made navigating my teenage years a bit tougher than I imagined. Of course, I was one of the many people who was led to believe in the narrative that losing my virginity was going to be a big moment in my life that would change me as a woman forever. Instead, it put me in a lot of pain. I was not prepared, I was not happy, and I was not equipped with any knowledge on how to take care of my pain AND my sex life simultaneously.
Fast forward 10 years, I am in a happy, healthy relationship with my sexuality (and my fiancée) and I’ve learned some important things along the way. Communication and disclosure have been critical components of navigating enjoyable sex. I don’t have it perfect, and I don’t know if I ever will, but understanding its importance has been a good place to start. Unfortunately, most of my knowledge has been gained through my own research, my therapist, or online blogs like this one. Sexual health and wellness classes in public education barely cover the basics, and leave students (like 14-year-old me) with little to no education regarding consent, communication, or pleasure. Naturally, this also left out the discourse of diverse sex experiences that include disability, gender, sexuality, pleasure, and all sorts of distinctions in how each individual experiences sex.
One day, I know this will change. Systemically, we have a lot of work to do to get rid of the hetero-normative, ableist, male-dominant culture of sex. It can’t be done in one day, but I truly hope that I can witness it in my lifetime. Sex education has been a hot topic recently, and for a good reason. Research has proven that comprehensive sex education can be harm reducing, and The Journal of Adolescent Health reports that quality sex education has broad, long term benefits for young people’s physical and mental health. Getting school systems and abstinent-insistent people to believe in those facts is another story. So for now, we gather here, around a little blog, learning of one person’s experience to hopefully give you insight and inspiration for your own.
Do you want to know the real nitty gritty? The kind of shitty reality? I had to educate myself. I’m not saying this is acceptable or something I am proud of, but it is the unfortunate reality for someone who grew up with a rare chronic pain disorder and also had to find her way through coming out in the queer space. The thing with disability is that it just means you’re different. Not wrong, not incapable, not bad, not unable. Just different. Maybe that difference is as easy as learning that a pillow under your hips really helps with the joint pain during intercourse (seriously… try it), but sometimes it means a really deep fear of pain during sex that takes years to overcome (that one hit me hard). Sex can be literally whatever you want and need it to be. As long as it is enjoyable and consensual, the rest is up to you and whoever you’re doing it with.
Disclosing a disability, or anything that might make your preferred way of intimacy outside of the norm is also up to you. There’s no guidebook on how to do it, but it does have to be done in a way that puts you, your comfort, and your enjoyment at the forefront. Personally, I found it easiest to disclose my chronic pain to the partner(s) involved and go from there. If they were not capable or willing to adjust, pause, or make modifications for my benefit, I probably didn’t want to be sleeping with someone like that anyway. Luckily for me, it’s been nothing but positive and supportive vibes. Also, when you are in a sexual relationship with someone you are comfortable with, give new things a try! There are options for everyone, if that’s what you’re into.
The takeaway here is this – comfort, confidence, and consent are key. Specifically related to my experience with chronic pain and intimacy, these 3 notions became my go-to in understanding what was right for me.
Do I and the person(s) I am with consent to this happening? (and I mean all of this… chronic pain interruptions and modifications included.) Yes? Great. Do I feel confident that the person(s) involved will respect my boundaries and pain? Yes? Great, next. Am I physically and mentally comfortable, putting my pain management first, and making sure that I am not sacrificing my physical comfort to please people? Yes? Wow. Good job, let’s get it on.
Editor: Lisa Hou