Dystonia, a rare movement disorder that causes uncontrollable muscle spasms like a sudden jerk of the head or contortion of the arm, can be incredibly vexing and unpredictable. Some people’s symptoms are mild and contained to one part of the body. In other cases, symptoms affect multiple parts of the body and become so extreme that they cause severe pain and exhaustion. Spasms can occur only in specific contexts—or constantly; symptoms can remain static in terms of intensity and frequency throughout one’s life—or get more severe over time.
It’s usually impossible to predict these details. Medical experts even struggle with how to classify, diagnose, and tackle different types of dystonia in the field. The condition can crop up at any point in life due to an illness or injury that affects movement centers in the brain, some latent genetic factor, or something else entirely; it’s often difficult to pin down and address a cause in any one case.
One of the few constants across dystonia experiences is the toll the condition can take on people’s sex lives. A handful of studies, and discussions on dystonia forums, suggest that many people with the condition experience some level of sexual dysfunction related to it. People may feel self-conscious about the prospect of having spasms during sex, which can take them out of the moment. Ironically, as stress often helps to trigger spasms for people with dystonia, anxiety about going into convulsions during sex may make such episodes more likely. When people with dystonia do have spasms during sex, they often occur in moments of intense physical tension or stimulation, like orgasms. The discomfort of these convulsions can derail sex, and even tinge pleasurable experiences with pain and fear.
There is no cure for dystonia. But there are many potential treatments—usually some mix of muscle relaxants, drugs that affect neurotransmitter levels, Botox injections, physical therapy, and lifestyle management, although sometimes surgical interventions are necessary, too. Once people with dystonia find the right regimen for their particular case, their spasms may grow less frequent and severe, which in turn can make sex more viable and pleasurable for them. However, finding the right treatment for each individual can be a very involved process.
Dystonia researchers have not paid much attention to how the condition and its treatments affect people’s sex lives, so medical experts rarely discuss sex when helping people try to navigate life with dystonia. Few people with the condition have spoken up about their experiences with sex, even on private forums. This lack of guidance, or even just space for open dialogue, can make it exceptionally hard for people to figure out how to manage their sex life alongside dystonia.
To address this gap, VICE reached out to Alice, a woman who lives with dystonia, and her partner, Harvey, to talk about how they’ve accounted for the condition in their sex life.
This interview has been edited for length and clarity. Alice and Harvey’s names have been changed to protect their privacy.
Alice: In 2013, I had a stroke-like episode—droopy face, trouble with my vision, weakness in my arm—but when I went to the hospital, all my tests came back normal. The next day, I started having these recurrent episodes where it felt like there was a hook in my mouth pulling my chin down towards my shoulder; my eyes would go twitchy; and my tongue would stiffen up, making it hard to get my words out.
The symptoms were mild until they ramped up in the spring of 2014. During episodes, it felt like my neck would give out, and I’d get locked with my shoulder and ear pulling towards each other, totally unable to do anything. I got body spasms, which made it look like I was having seizures. These episodes usually hit when I was under stress. But it seemed like there were also a lot of environmental cues that set them off—including certain songs on the radio, for some reason.
At first, my doctors had no idea what was happening. But they told me that in order to control my spasms I’d either need to go on these horrible medications with a ton of side effects or get regular Botox injections. I was going through a separation at the time and caring for my two daughters, so I decided to go for Botox. I thought it would have less of an effect on my daily life. I went to a pain management clinic for those shots in late 2014, and the doctor there said, “Oh, it looks like you have cervical dystonia,” [one of the most common forms of dystonia, in which spasms occur mainly in the neck and face]. I was like… What?
Two or three years after that diagnosis, I went to a neurologist who specializes in dystonia and Parkinson’s disease who said that there doesn’t appear to be a genetic component to my dystonia, and that I have what’s called functional dystonia: My body doesn’t respond optimally when it’s under a lot of stimulation, whether it’s good or bad.
As soon as my symptoms ramped up, I started thinking about how they’d affect my sex life. I mean, with two kids and a separation to deal with, getting into another relationship wasn’t at the front of my mind. But I still had the thought, Who’s going to want to be with somebody with this crazy neuromuscular disease that has no cure, and that will likely be progressive? My doctors told me I’d probably need a wheelchair within 10 years. (In reality, in my case, seven years in, I have almost no symptoms most days; I’ve learned how to manage my condition very well.)
Harvey: Alice and I went to high school together, but went our separate ways after graduating. In 2015, we reconnected when we found out we lived near each other and were both going through separations from our partners. Before we met back up, I had zero knowledge about these kinds of movement disorders.
Alice: I wasn’t really physically attracted to Harvey at first—mainly because relationships still weren’t my main focus. I’d gone on a couple of dates after getting my diagnosis. I tried to have sex with one of those guys, but it wasn’t a pleasurable experience. That was more due to the process of readjusting after getting out of a 10-year relationship, though, and having trouble investing in the experience, which likely kept me from feeling pleasure and reaching an orgasm. But in the fall of 2015, Harvey and I just kissed, and things went from there.
I was afraid to get more intimate with him. I could masturbate without spasming, maybe because I had more control over the sensations, and they weren’t as intense as sex usually is for me. I worried about how physical intimacy with someone else might trigger an episode. Then we had sex... and it was exciting and good!
But I did at one point suddenly feel like, Oh, something is about to happen with my symptoms. But I don’t want to stop yet. Should I just let it happen? I don’t have control. I guess I’m going to let it happen. I started crying. But the sex was still great. [Laughs]
Harvey: That first time, my head was nowhere near her face. So, from that angle, I had no idea that it was an unpleasant dystonic spasm. Naively, I just thought it was a heck of an orgasm.
Alice: We had so much vulnerability in our dynamic to begin with. We felt so comfortable together during that first time we had sex. So, even after he noticed that I was crying, it wasn’t awkward. We just stopped.
Harvey: She didn’t tell me sex had triggered a dystonic spasm for her right away. But a little while later, we had a conversation about it. The way you explained the feeling to me was, “Imagine your muscles getting as tight as possible, like they’re knotting. So, it’s that in my upper half, but fireworks in my lower half.” It was an intense conversation. But after a few moments of cuddling and talking about it, we were just like, “OK, do you want to do it again now?” [Laughs]
That second time, we had direct facial content, so I could more clearly see her dystonic spasms. Soon, it became clear that almost every time she reached orgasm, she went into those spasms.
Alice: Yeah, from 2015 to 2017, anytime we had hot, heavy sessions I’d go into spasms at some point. When we were more tender, or just not over-exerting ourselves, it didn’t happen. I just didn’t give enough of a shit about my symptoms to stop having sex the way I wanted to, though. I mean, it is what it is. So, our sex usually was—and is—on the more intense side of things.
Harvey: Obviously, we avoid things that put Alice into an intense state of physical tension, because they will definitely set off spasms. Like, I’m not going to pick her up and put her in a pretzel position. But those few things we don’t do don’t significantly shape our intimacy.
Alice: Because we had a strong sense of trust and connection from the outset, I think we both knew that no matter what happened with my spasms, and how they affected our sex life, we’d get through it. Even if Harvey had said, “Man, these spasms are too weird for me during sex,” I’m pretty sure we could have just found some other way of being intimate.
Harvey: The spasms became less common as Alice learned over time how to limit her mental and physical stress, and to notice and respond to the early signs that a spasm was coming on. We started to make decisions in the moment, as she felt the first signs of a spasm coming on, about whether to keep going like we were, or to change positions or intensity, or to back off entirely for a while. Like, one time, she was worried about having a spasm while we were near the edge of the bed, so we shifted to a position where I could keep her secure in one place.
Alice: When I feel tension in my neck or my face starts to droop, I just say, “Hold on a second.” Sometimes, we slow down to decrease my level of stimulation. Sometimes I need 10, 15 minutes to realign myself; I run through a list of things like, Am I hydrated enough today?
Harvey: Even with good management, significant stress can still set off spasms for Alice. It seems like, when they happen, they might be more painful than they used to be, because she’s lost her tolerance for that type and level of pain.
Alice: Yeah, I’d say so. But I don’t think I’ve had a major spasm during sex since 2018.
Harvey: You still have some spasms now and then.
Alice: Those are just like me tilting my head and convulsing a bit. I don’t even recognize those anymore, really. You can probably see them better than I can feel them.
Communication is huge for all of this. If we hadn’t established that early on, it’d be a completely different ballgame. Most of our conversations are simple, straightforward, and in the moment. Occasionally, I’m just feeling really fatigued after a long, stressful day. I know, in those moments, that I can say, “If we want to try having sex later, we can start out slow and see how it goes. Or maybe we can just do something gentle in the shower.” (A warm shower helps my muscles relax.) There’ve never been hard feelings between us if we have to make an adjustment or just stop sex for any reason.
Harvey: Everyone comes into a relationship with baggage. I lost a son in my first marriage. So, while I didn’t have any physical conditions to navigate like Alice does, there have been a lot of physical and emotional triggers on my end for us to work around. But with that, and with this, we’ve just always kept the lines of dialogue going, you know?
Alice: In short, we just have great sex. [Laughs]