Essential tremor, a neurological disorder that affects up to four percent of people, causes uncontrollable trembling, usually in people’s hands and arms, but sometimes in their heads and necks, jaws and tongues, or legs and feet as well. Even medical professionals frequently confuse the condition with early-stage Parkinson’s disease, another disorder associated with shaky hands. But Parkinson’s tremors are most visible when affected body parts are at rest, while essential tremors are most visible when they’re in action, growing more pronounced the more an affected muscle flexes or stretches. Stress, fatigue, illness, hunger, extreme emotions, uppers like caffeine, severe cold, and a host of other factors all tend to exacerbate essential tremors.
Despite its prevalence, many medical experts have long dismissed essential tremor as a minor inconvenience. Some don’t think it should be considered a disability. Until fairly recently, the condition’s official name was actually benign essential tremor. Some institutions still use that diminishing phrasing.
In truth, the condition is both highly variable and progressive. Some people only develop mild tremors around middle age that don’t change much thereafter, while others develop notable tremors as children that get 1.5 to 5 percent worse every year, so that, by the time they hit middle age, they struggle with basic tasks, like writing. Many also experience internal tremors that cause balance and coordination issues. Self-consciousness about others noticing their shaking hands, quaking speech, uncertain steps, or other visible symptoms often leads to anxiety, which makes tremors worse. Emerging research also suggests at least some forms of the condition may be neurodegenerative, causing smell, hearing, and cognitive issues—all of which are also potentially progressive.
Researchers are still struggling to figure out what causes and how to reliably diagnose and treat essential tremor. The medications used to treat the condition have little to no effect on over half of all patients, and alternative solutions like brain surgery come with serious side effects. Many end up relying on stress management, sleep hygiene, and the occasional tremor-quelling glass of alcohol to even slightly manage the condition. No studies have explored the condition’s effects on sex, even though balance and dexterity issues, self-consciousness, and the social aversion they may cause all seem like they could have clear and significant impacts.
People rarely speak openly about the ways the condition affects their lives in general, said Peter Muller of HopeNET, an essential tremor advocacy group. This may reflect widespread dismissal of essential tremor, a common impulse to hide symptoms, or hopelessness at the lack of reliable treatments. Whatever the case, this makes it functionally impossible for people with this condition to find ideas on how to manage it in their intimate lives.
I started showing essential tremor symptoms at age six and was diagnosed about 20 years ago. I spoke to Karyn Lee, who was also diagnosed with essential tremor in childhood and experiences significant symptoms, about the diverse ways the condition affects our sex lives.
This interview has been lightly edited for length and clarity.
VICE: When and how did you first notice your tremors?
Karyn Lee: In elementary school. Especially when I was outside in the cold, I’d have tremors in my head that would make my teeth chatter out of control, and the people around me would tell me I was being overly dramatic. That’s part of when you start to notice your tremors—when other people first notice them. They think something more is going on. I’ve had people ask me if I’m about to have a diabetic attack, or assume I’m in withdrawal from drugs and alcohol.
The teachers and students in my school assumed I was anxious or hiding something. They’d frequently ask, “Why are you nervous?” I still get a lot of that.
Yeah, or people assume you’re high-strung. The first time my now-husband noticed my tremors, we were 19 and sitting at a table together. He asked me to pass the milk. I extended my arm to pass it, and stretching my arm like that, my tremors got really bad, so the container started to shake. He thought I was impatient and rude, waving it like, Come on, hurry up and take this.
When did you start to think about how your tremors, or the way people saw them, might affect your sex life?
In my mid-teens, right when I started to think about dating—and when my tremors became more pronounced. I was starting to have trouble using utensils. I was dropping food on myself. So, even with basic "let’s go on a date and have dinner" stuff, I was worried about what people would think. As if you need more things to worry about when you’re a teen and first thinking about dating for the first time, right?
I have vivid memories of losing control of a hot cup of tea on a bad tremor day when I was out on a date in high school, and dousing both of us. Those were mortifying experiences.
When I started thinking about sex around the same time, I mainly thought about my tremors in terms of self-consciousness. It’s a big thing to take off your clothes in front of someone for the first time. You worry about whether they’ll think you’re too fat, or too skinny, or this or that. Then you also worry, Are they going to notice my shaking? Will they get worried? Are they going to ask about it? The last thing you want, in the moment, is to have a big conversation like, “Yeah, I have this degenerative nerve condition.”
Usually, you don’t talk about the condition with people, right? You just try to deal with it.
Yeah, you don’t want to draw even more attention to it.
But I realized that I needed to start disclosing what was up with my shaking to people I got involved with. So, I mentioned it to a couple of people I dated in high school. But I was still in my head during sex, trying not to do things wrong to embarrass myself. I spent my time in the moment just hiding my tremors, which ends up taking you out of the experience entirely.
What did hiding tremors during sex involve? Avoiding acts or positions that might trigger or exacerbate your tremors, or make your hands easier to see? Or something else?
Avoiding certain positions, yeah. But also just generally not exerting myself too much, because that plays a big role in my tremors. That meant I was never really getting into sex, which limited my enjoyment even more than just feeling self-conscious.
What acts or positions don’t work well with your tremors?
Anything to do with balance. I don’t know if you get leg tremors, but how adventurous can you be if you’re constantly at risk of falling over at any time and hurting yourself or others? It’s not like I’m not fit. I could go run a 5K right now. But my coordination is lacking. Any position that involves standing is challenging. It does cramp my style a bit not to be able to, for example, go have a picnic and then have spontaneous sex standing up in the woods.
I don’t have bad leg tremors, but I do have internal tremors and balance issues. No matter how fit I am, I’m always… afraid of stairs. I cannot be confident my foot will hit the next step.
It’s the juxtaposition that trips people up: Most of the time, people look at you and think you’re totally normal, especially if they don’t see your tremors. Then it’s jarring for them when suddenly you’re not OK and falling over. It’s a surprise—especially if it happens in sex.
My baseline tremor, even when it’s not exacerbated by exertion, stress, or whatever, is bad enough that I always have a hard time controlling light touch. I only feel in control of my hands if I’m exerting a lot of pressure. Whenever I’m with a partner who enjoys a light caress—or any time I use my hands on a particularly sensitive area—I just do not feel confident about the type of sensation I’m creating. With a new partner, even if I explain my dexterity issues, it’s hard not to be in my head about that.
I can see how that would be an issue if I were on the dating market again. But I’ve been with my husband for 16 years now, since we were both 19. We’ve shared so many experiences together that we have this high level of comfort and trust. So, at this point there’s not a lot of things I worry about doing wrong with him. Although I do stay away from giving oral sex if the tremors in my mouth are really bad, because that could lead to some unfortunate teeth issues.
[Laughing] Yeah, for sure.
He’s got a really good sense of humor about my tremors. He knows them well enough that he’s gotten into this routine doing the little things I can’t, like taking off my jewelry because I have trouble undoing clasps. That’s grown organically as my tremors have gotten worse over time. That general level of comfort of being with someone who knows your body and works with it carries over into sex. The familiarity of being with somebody who you’ve felt safe with for a while takes away a lot of fear of doing something the wrong way. I’m not saying you need, like, marriage or a deep connection to have good sex. But if you find somebody who understands you, and you’re not afraid to be or do anything in front of them, that means a lot.
I actually only told my husband about my tremors after we moved in together. I just said, “You’re going to notice some weird stuff now that we’re living together. Like, now you know the reason I don’t wear makeup isn’t because I’m making a statement. You’ll see I can’t put it on myself.”
He did have a bit of a learning curve really understanding how my tremors work. He was raised in a family where people told each other to cowboy up and get over things. So in the beginning when I was having a bad tremor day he’d tell me to just toughen up and power through it.
Sure, because you can definitely control tremors by just toughening up.
Exactly. But with time and communication we got to a place where now he’s more productive. He accepts it when I have a bad tremor day, but he pushes me to acknowledge what might have triggered it and how I can avoid self-inflicted bad tremor days in the future.
Did the two of you ever sit down and have a conversation about how your tremors affect your sex together? Or have you always just figured that out in the moment?
It’s always been an on-the-fly thing. Because of our comfort level together, I can always say, “This is a problem. Let’s try something else.” If you don’t have the freedom to say anything you want about your sex life to your partner, then you’re just nervous, and that’s a problem.
You also just get caught up in the moment in sex and go with whatever works at the time. If something goes wrong with what you’re trying, you can just laugh at it. If you can’t laugh with somebody in those moments, you probably shouldn’t be having sex with them, right?
You and I both know our tremors are going to get worse as time goes on. I sometimes get anxious thinking about how much control I might lose over my body, and about what that could mean for my relationships and my sex life. Do you and your partner ever talk about how your tremors might evolve in the future, and how you'll deal with that?
My husband and I have gone through shit: The loss of a child. The adoption of a child. A natural disaster. And, now, a pandemic. We’re going to find a way through anything that develops with my condition, just like we found a way through all of that. We accept that our sex life may not be the same in the future. But we’ll find something that works for us.
I know he’ll approach everything with humor, too. Like, based on how my leg tremors are going now, one day I’ll probably struggle to walk. We’ve talked about that. Whenever we do, he’s just like, “Great, then we’ll figure out how to pop a wheelchair into park and have sex in it.”