Rare Asexual Life
Navigating rare disease while asexual and queer
I have found a lot of relief and comfort in finding words to better understand myself and to connect with people who have shared experiences. For me, some of those words include queer, classical Ehlers-Danlos syndrome (cEDS), disabled, and asexual. Learning there are other people like me in the rare disease and LGBTQIA+ communities and connecting with them has brought a lot of new strength, joy, and friendship into my life. I choose to be visible with my diagnoses and identities because I have found a lot of love in both communities (and especially where they meet) and that has made my journey easier.
I first came out as asexual when I was 13 years old. I later went through phases of experimentation and exploration, questioning if I was pansexual, gay, polysexual, or somewhere in between and trying to understand what I did or did not feel for my partners. All in all, I have found the label itself doesn’t matter that much to me, and I often just identify myself as queer. I have a hard time understanding gender sometimes and where I fall on its spectrum as a transmasculine person, but I have settled into understanding myself as an asexual person who is comfortable with their sexuality and a non-binary person who appreciates gender fluidity.
