The Challenges I Face With Relationships and Sex as a Woman With Dystonia

I have cervical dystonia, which is a debilitating movement disorder that causes my shoulders, neck and other areas to spasm constantly. I also experience severe chronic pain and nine other disabilities. I’m 26 years old and currently dating my boyfriend of five-plus years, John. To make matters more difficult, John lives in Austin, Texas, and I live in Northern California.

Before meeting John, I was diagnosed with cervical dystonia and a whole host of other health issues. I never thought I’d find someone who would want to date me, let alone want to spend the rest of his life with me. I thought I would be single for the rest of my life. I thought I would be a cat lady and resolve to stop looking for love. I thought I was damaged goods. I thought no one would want me. Heck, I didn’t even like myself in the early days of my diagnosis. I was at war with my body; I didn’t have time for boys.

Fast forward to today. John and I are a happy couple. Although we have a long-distance relationship along with my disabilities, we manage to work through our challenges. A constant challenge is managing my disabilities and making sure I’m in a positive headspace. If I’m not, John gets me dressed and we go out. Then I feel better. It’s as if he intuitively knows what to do. We’ve also learned to be flexible when my symptoms arise.

By now, you might be thinking this guy John is extremely understanding and compassionate. I can verify that he indeed is. I can’t count how many times he’s carried me to the bath when I’m too weak, brought me food and done my laundry (even my delicates). I’m pretty spoiled. I quite enjoy it.

Now that you know more about my boyfriend and me, I think we can start to get more personal. Now I can talk to you about a biggie: sex. Yes, I can confirm we have sex. And I can confirm we both enjoy it very much, but there’s a big secret we carry around about our sex life. You see, my disabilities affect every aspect of my life — even my sex life. Now, how can I put this without sounding inappropriate? Well, we’ll be enjoying ourselves and then my spasms and pain kick into overdrive, and we have to stop. You see, that’s why John is literally the best boyfriend a girl could ask for. He never blames me when we have to stop. He always comforts me because I get frustrated and usually start to cry. I mean, can’t a girl just get laid? Some days, I get my medication timing just right and, well, you know the rest. 

I don’t think there’s enough of a conversation about people with disabilities and sex. My health insurance only referred me to a specialist who treats cancer patients to have a better sex life, so I didn’t qualify. I believe it’s something our healthcare system is not properly addressing. Since some experts say sex is an important part of happiness, I think we should start a conversation.

If you are a person with disabilities, how are you able to achieve a fulfilling sex life? If you are a partner without disabilities, what things can you do to help your disabled partner? Where are the experts who can help people like me have more sex, and why aren’t they available to me through my healthcare company?

Follow this journey on Chronically Whitney.

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