Six years ago, I didn’t know about the degenerative disease lurking in my brain. My health hadn’t been great, but doctors chalked it up to post-viral fatigue, suggested I get some exercise, get out more, get a hobby. They ran blood tests, and sent me to an allergy specialist. Every result complied with the healthy diagnosis continually thrust upon me, but I knew something was wrong.
Before finding out the literal, physical limitations I have as a result of MS—such as intense fatigue, and near-constant nerve disturbances—I wasn’t thrilled about my sex life, but it also wasn’t a top priority. Despite being with a long-term partner, we had sex infrequently, and my overtures were the ones usually being turned down. Those rebuttals made me feel needy and insecure, but before diagnosis, I accepted the status quo.
MS changed the way I looked at my sex life. Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.
Sex After Sudden Disability
The desire to experience a fuller sex life became even more urgent after a relapse left me numb from the waist down. With intermittent sensation in both of my legs, and sporadic nerve pain—ranging from electric shock prods to the spine to the feeling of a thousand needles pricking my thighs simultaneously—I worried what my sex life would look like, and if I’d even have one.
Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.
I set about regaining my lost orgasm with a lot of solo work. It was a long and pretty lonely journey, with multiple moments in which I thought my sex life was doneso. Meanwhile, my relationship was suffering. My partner’s regular rejections of my overtures became even more personal and hard to take, post-diagnosis. I desperately craved an intimacy that I didn’t have. And with an incurable, unpredictable disease ready to pounce at any moment, I realized that the window left in which to develop my sexual side was time-sensitive.
Reclaiming My Sex Life
Even after my relationship failed, though, I refused to give up. Perseverance was key, and my nerves found new ways of sending signals as my body rewrote its wiring. And let me tell you something. When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.
It was the first step to me reclaiming my sex life, which is today better than it has ever been. With a new partner, it’s the kind of sex life that I, as a disabled person, once believed to be impossible.
When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.
A big part of improving my sex life involved accepting my new body: not just its painful limitations, but the strange sensations it creates on a daily basis. Which means sometimes accepting that sex just isn’t going to happen right now. Before, when I had a bad day of flaring symptoms, I would fixate on everything I couldn’t do or achieve in that moment, especially sex. But you have to feel good for sex to be good, as I have learned to accept from experience. So when fatigue is hung like a meat-hook from my skin, I don’t attempt intimacy, knowing it will do me more harm than good.
Never Give Up
It helps that my partner is supportive. Despite the anxieties that come from being intimate with a disability, he is never upset or impatient if I have to hit pause part way through, whether for an impromptu bathroom break caused by my irritable bladder, or a springing nerve pain reaching for my skin’s surface. He’s in no rush. He’s happy to take his time, always fine with switching things up if it’s not working for me, and never blames me if there’s an awkward moment or clumsy movement, which there will be.
And look, truth time: accessories matter. My vibrator’s more important that it every was before diagnosis. In fact, along with lubrication, it’s essential to my life as a sexually active disabled people.
The health of my sex life is not determined by [my] limitations: it is determined by how I manage them.
On a good day, sex is the ultimate escapism from the unconventional temple that is my body. It can be better than drugs, as endorphins wipe out my discomfort in a way that prescriptions can not. Yes, I have limitations, but as with so many things in chronic illness, the health of my sex life is not determined by those limitations: it is determined by how I manage them.
Being diagnosed made me realize that it’s okay to ask for what I want in my sex life. One day, my sensation might make sex even more challenging than it is right now, but that’s okay. I understand now that great sex doesn’t just happen. The key is to never stop trying.