My Radical Sexy Disability
I am a sexually active twenty-year-old woman with a rare, life-threatening autoimmune disease that I will be receiving a bone marrow transplant for this July. I’m also pretty sure you’ve never read those words together in a sentence before. That doesn’t mean they don’t belong together. That just says it’s taboo.
It shouldn’t be.
I began my journey with my illness at fifteen years old when I started passing out unexpectedly in class. From there, my disease progressed to swollen joints and a rash all over my body. Soon I was unable to go to school; I couldn’t sit up without wanting to vomit. I was in constant pain. Eventually, I developed fevers of above 103 every single night for six months. As the years went on, specialists were confused by my condition. It wasn’t until my last month of high school that received a diagnosis: Celiac disease, Systemic Juvenile Idiopathic Arthritis, and Macrophage Activation Syndrome (MAS). My MAS was extreme; to the point that it was never brought fully under control. For the next year and a half, as I settled into my new life in college, my disease remained flared – simmering under the surface – but just controlled enough for me to live a healthy life. Then, this past December, my disease flared again for the fifth time. Afterward, it became clear that without serious intervention that my body would continue until it won. This July, I will be receiving a bone marrow transplant.
As you can imagine, this has made sex and dating complicated. From the beginning, even in high school, I felt isolated. I felt rejected by people I was attracted to because of my illness. As my body underwent drastic changes because of my disease and medications, it became difficult to become comfortable in my own skin. I wanted to feel pretty and sexy just like the other women in my life, but putting on makeup and feeling good about my body was too much energy. Despite what you see on TV, sometimes nobody asks the sick girl to prom.
When I got to college, I felt like this isolation was even more pronounced. I hadn’t had any boyfriends or girlfriends and didn’t have the experience of dating in high school. When I finally gave it a try, I didn’t even know where to start the conversation. How do you tell another person that you’re sick? How do you start a relationship like that? At times, it felt like the giant pink elephant in every conversation. I’ve been told by multiple partners in just the past year that they could never date me because of my illness. I’ve had people tell me that just having sex with me is difficult for them emotionally and that they just can’t do it anymore. I’ve had both men and women tell me that they feel uncomfortable being involved with someone ‘like me’ – whatever that means. The result has been a lot of rejection. It’s left me feeling hopeless more times than I can count, for something that I cannot change and am, in fact, incredibly proud of. I am not ashamed or upset that I am disabled. My identity as a disabled person is a huge part of my perspective on life. I am proud to have my experiences, even if they are different. I do not believe that they make me harder to love.
People often say that they want to be their best walking into relationships, including health, but for me, that might not ever be an option – just like it has never been before. To tell me that I shouldn’t be sexually active or in a relationship when I’m ill is to forfeit that part of myself altogether, perhaps forever. Even though I am sick, I deserve affection. I deserve to be loved for who I am, just like my abled peers. I deserve to go on cute dates and have great sex. I deserve to own my body in every possible way – including my sexuality – regardless of how healthy I am. I became an adult woman living in and out of hospitals, but my sexuality shouldn’t have to be checked at the disability door. Even with an upcoming bone marrow transplant, I am still a whole person with needs. None of that goes away with a procedure coming up – especially now. If I have learned anything throughout this journey, it’s that the beautiful, simple moments in life carry us through the difficult times. It’s that the love and support of others is a lifeline when we are at our worst and that it should not be rejected but embraced when we are the most vulnerable. I will not stop having those moments now. I need them to get through, and I deserve them too.