Let's Talk About Sex and Ehlers-Danlos Syndrome

There’s an aspect of living with a chronic illness like Ehlers-Danlos Syndrome (EDS) people rarely mention — intimacy. For those of you with a weak constitution or who are easily offended, now would be the time to stop reading as this piece might be TMI.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My husband and I have been together a long time, a lifetime. He is my confidante, my companion and my one true love. And he is also hot! Like most other young couples when they first get together, we were ridiculously head over heels in lust. With pure raw intense passion, we’d swing from the chandeliers and fool around at every given opportunity. We couldn’t get enough! It was a tremendously important part of our relationship.

As the years rolled on, the moans and groans of ecstasy turned to moans and groans of discomfort and at times, screams of horrific agony. (Granted, they sound incredibly alike, so one can see where there might be confusion.) There were nights when our bedroom might have been the set of a sitcom. He’d be thinking he’d really nailed that g-spot thing, the “ooohs” and “ahhhhs” gradually increasing in volume to become full-on screams. The louder I got, the harder he would go at it, thinking I was loving it. I had absolutely no opportunity to let the poor guy know my hip had just popped out! After incidents like that, he became petrified that he would break me. The mood killer was his unceasing questioning if I was OK or comfortable.

Before my diagnosis, I just assumed sex was difficult for everyone. Don’t get me wrong, I absolutely enjoyed that particular pastime with my man, of course I did! There was nothing like those moments with his arms wrapped around me and making me feel like I was the only woman on this earth. To know I was everything he wanted. But there came a point when the overwhelming pain and exhaustion from having a chronic condition far outweighs the pleasures of intimacy.

I simply didn’t want sex anymore. But I wanted to want it.

Let’s not forget to factor in that I felt entirely unattractive. And lazy. My medications made me put on weight, but my lack of mobility made it almost impossible to lose it. I was no longer the woman my husband fell in love with or found irresistible. I was a side effect — a negative side effect.

For the longest time, our sex life became stagnant. Worse still, we lost the tenderness. Even just having his big man arms around me was painful. I was afraid to have him touch me, dreading the pain, and he was afraid to try, knowing he would face rejection yet again.

I was certain I would lose him. I felt completely alone. This was not an issue I felt I could discuss with anyone. I believed no one would understand.

Finally the fear and insecurities and thoughts of driving him away pushed me to find a solution. I read every article and blog I could find and educated myself on how to safely, comfortably enjoy relations with a condition such as EDS. We have adapted, and in the process found a new, higher level of affection for one another that we’d never achieved before. While we may not be as animalistic as we once had been, we are exactly where we need to be.

Having a chronic illness doesn’t need to be the end of the road for your sex life. It might just need to be rerouted.