My relationship with my sexuality has always been disorganized, even before I became legitimately disabled by my conditions. I grew up feeling like I needed to fit into a mold I wasn’t shaped for, and a body I didn’t even understand was objectified by many people around me from a young age. I remember older men stopping my 12-year-old self at the mall and acting surprised that “someone so sexy wasn’t 18 yet.” I seemed to only exist to please and benefit others. Soon, I obsessed over becoming perfect at it, in every way I could. At that expense, I experienced intense relationships and countless violations of my boundaries and self-worth.
By age 26, I had pushed past every limit I had and life became too much for me. I had an emotional and physical breakdown that stopped me in my tracks. Suddenly, I was on a journey to getting properly diagnosed with Ehlers Danlos Syndrome. I was never able to return to work afterwards, and that shift became the catalyst for discovering who I truly was. Who I was – in my own eyes, not just through the eyes of others, and society.
I was finding what I wanted, not what others expected of me. My whole identity came into question in the most terrifying and beautiful way. I’ve still got a ways to go, but I’ve come very, very far. I’ve let go of so much rigidity in my thought processes, maybe in hopes of it softening the pain and tension in my muscles. Either way, fluidity feels natural to wear. Everything ebbs and flows in nature, after all. That being said, I am not currently sexually active despite being in a 12-year relationship. I haven’t been active for 3 years, maybe more.
Between my joint pain, fatigue, and extensive trauma history, it’s not an enticing situation. My partner has a chronic back injury that contributes to the obstacle. I’ve been told our lack of sex is strange — that there must be something wrong with our relationship, that he must be cheating on me. And I’m here to tell you that this needs to stop. Intimacy can be achieved in so many ways with open and constant communication. We snuggle, hug, kiss, and give massages often. We still feel fulfilled after 12 years together. Maybe we will find a way to take it further in the future, maybe we won’t. I’m accepting what is, for myself, and for my partner. There is nothing wrong with either of us. I believe sexuality and sensuality is a powerful part of our lives that is necessary to explore in order to feel whole as humans.
I also believe if we incorporate more communication, compassion, and vulnerability into our lives, we will find connections develop in all types of ways. Being disabled, we are often forced to be creative in an inaccessible world – but that only makes us become more expansive, and often more accepting, beings. There are people who are disabled and hyper sexual, there are people who are disabled and, yes, asexual, there are disabled sex workers doing the damn thing, and there are disabled people somewhere in between trying to make it work for them too.
I truly believe that having a disability shouldn’t take away your privilege of experiencing sensual pleasure. I may be at an ‘undefined’ point with my sexuality, but I’m learning and discovering and growing all the time: through therapy, following educators and people on social media who inspire me, and talking with safe people and my partner.
I deserve to be in this world, and so do you.
Kate, 33, she/they
@__lynx_ on Instagram