My body quivered and shook, all muscles tense and spasming. My right hand curled in on itself. As my eyes rolled back in my head, I felt the strange sensation of my body being pulled into another time and place. Wow, that must have been some orgasm, you may be thinking, and while I had just had an amazing orgasm, this was not that. Rather, it was a seizure-like episode, in which, for a period of time, I lost all connection with this reality. My mind went on a journey while my body shook and tremored in bed next to my lover.
Learning to navigate sex as a disabled person has been a journey of learning to accept myself and my body, as well as realizing what I need in a partner — someone who is receptive and accepting of me as well.
Physically strenuous activities – like sex — can cause me to have seizure-like episodes
I experience what are called psychogenic non-epileptic seizures (PNES). According to the Epilepsy Foundation, PNES are episodes that “may look like epileptic seizures but are not epileptic and instead are caused by psychological factors.” While not talked about much, and often misunderstood, as many as 20 to 30 percent of people who are assessed for seizures end up being diagnosed with PNES. Essentially, I experience seizure-like symptoms without the neurological causes of epileptic seizures.
In addition, I live with several chronic health conditions, including ankylosing spondylitis (an autoimmune disease similar to rheumatoid arthritis) and fibromyalgia. Along with these conditions I often will have severe muscle pain and stiffness, sometimes accompanied by tremors. Sometimes, when the muscle tension or pain is intense enough, it will trigger a seizure episode. While doctors have been unable to tell me why this happens, I believe that my physical symptoms sometimes just overwhelm my nervous system to the point that it reacts with one of these episodes.
So, when I do anything physically strenuous, from dancing to yoga to, yes, sex, my muscles will often throw me into a seizure-like episode. These episodes can range in severity from mild ones where I gently twitch in certain parts of my body (often a leg or arm) but stay mostly present, to severe where my entire body spasms and convulses, and I fully lose sense of time and presence. During these more severe, longer episodes my breathing can become labored and I can’t respond to those around me. Afterwards, I often am disoriented and very emotional.
‘I thought you were dying,’ said my partner
Needless to say, the first time this happened during sex, it was a shock for both myself and my partner. One moment I was feeling the blissful after-waves of an orgasm, and the next moment I was slowly coming-to, disoriented, crying, and with muscles aching from intense spasming. My partner at the time was beside themselves, not knowing what to do. “I thought you were dying,” they exclaimed. We both were shook, and it took a while before either of us wanted to try sex again, uncertain of what would happen.
Eventually, I learned to cope with my new norm
It became clear over time though that this was my new norm. It didn’t happen every time, but more often than not, my sexual encounters would end in me twitching and in various states of consciousness.
While it had been scary at first, I eventually got used to it, able to anticipate it coming and knowing that it would pass. If this was the price I had to pay to have sex, I was willing to pay it!
My partner, on the other hand, was upset every time they witnessed one of my episodes. They didn’t want to have sex with me, even though I promised them I was okay and that they weren’t hurting me. For them, it was simply too much. We stopped having sex altogether, and eventually the relationship ended.
Talking to partners about my disability requires vulnerability
Now, this is a conversation I have to have with sexual partners. Much like someone else may need to have a conversation about sexually transmitted infections, boundaries, or similar, I have to let partners know that it is possible that during or immediately after sex I may have a seizure-like episode. This is an awkward, but necessary, conversation to have, but thus far potential partners have been open and non-judgmental.
It is a whole other thing, however, to actually experience this instead of just being told about it, and when faced with me spasming, in and out of reality, some partners haven’t known how to react.
I don’t blame them. I can only imagine how scary that must be, no matter how much conversation you’ve had about it or how much you think you’ve mentally prepared. However, coming-to with a partner looking over me, horrified, is not an experience I’d wish on anyone. I’m already feeling vulnerable, naked and having just had sex. Add to that my body acting in ways completely out of my control, and I feel like I’m on display, open to judgment and rejection because of my disability.
But finding supportive partners makes it all worth it
Conversely though, there have been times where instead of scared or mortified looks, I’ve come-to with a partner gently stroking my arm, or with a hand pressed upon my sternum. While I’ve known in those instances those partners have still been worried about me, the support and calm of their presence, and the lack of major reaction, make me feel as if my body and all its things it does are not something to be embarrassed or ashamed about, but rather are just part of who I am.
Sometimes, when I’ve had smaller episodes where my body is jumping and twitching but I’m still present mentally, a partner and I would laugh and make jokes. This has helped me to normalize the situation and what is going on in my body. Other times a partner would just hold me as I cried after an episode, wait for it to pass, and then ask me what I wanted or needed.
The bottom line
With time, I’ve learned that while I cannot control my body or what it does during or post-sex, I can control a few things in relation to it. I can control the types of partners I allow to share these intimate and vulnerable moments with. I only want to be with someone who is able to accept the nuances of my body and disability as opposed to being scared away by them. I also can control how I view my body, and as such I’ve worked (and continue to work) to accept my body as it is and push back against shame or embarrassment over my disabilities. My disabled body has just as much right to enjoy sex as any other, and I’m going to embrace it tremors and all.