We Both Have Narcolepsy. This Is How We Have Sex

“I recently tried putting rope restraints on myself to see if I could get out of them on my own, in case Liam ever fell asleep—and I can!”

Jan 5 2022, 4:47pm
A series about sex and stigma.

Movies and television have long misrepresented narcolepsy for a cheap visual punchline. Those of us who grew up in the aughts may recall a string of major releases like Rat Race, Deuce Bigalow: Male Gigolo, and Moulin Rouge! that included characters almost solely defined by narcolepsy. These characters dramatically collapsed left and right, usually in order to inject cheap laughs into otherwise tense or quiet scenes. 

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More recent depictions of narcolepsy have been a little more dynamic (Homer Simpson was diagnosed with narcolepsy in 2015, and The Simpsons, of all shows, didn't treat his condition as a gag). But the more slapstick comedic trope was such a 2000s staple that it still influences how people perceive the condition, and even more recent and measured depictions portray people with narcolepsy as romantic oddities. 

In truth, the chronic sleep condition, which usually sets in during young adulthood and affects hundreds of thousands of Americans, typically doesn’t just make fully awake people randomly pass out. The main symptom of narcolepsy is extreme, persistent drowsiness during the day. People with narcolepsy can fall asleep suddenly, but they may just go into a microsleep, which lasts for a few seconds or minutes. Their eyes usually stay open, and they might keep talking or moving—though illogically—and they usually don’t remember what they did or said afterward. Sleep attacks of any length can also occur during dull, repetitive, or low-intensity activities—but they can happen even when people are intensely engaged, including during sex. 

Since people with narcolepsy tend to drop directly into dreaming sleep rather than move through the typical stages of sleep, dream hallucinations can bleed into their waking consciousness. They may also experience chronic sleep paralysis. They usually sleep as much as the average person, but the fragmented and atypical nature of their rest can cause concentration, memory, and energy issues. Most people with narcolepsy also experience cataplexy, a sudden short-term loss of muscle tone and control, usually in response to intense sensations or emotions. The exact combination, intensity, and frequency of these symptoms varies from person to person, and may change over time. But they can all affect people's sex lives. 

Many people with narcolepsy say fatigue and concentration issues interfere with interpersonal interactions. They often withdraw from social situations, dating, and hookups to avoid misunderstandings or awkwardness. Some also find that sexual stimulation sets off their cataplexy. This, as well as energy issues and hallucinatory experiences, can interfere with their ability to get or stay aroused or to come.  

Although experts don’t know what causes narcolepsy, a mixture of lifestyle management and medication can mitigate most people’s symptoms. However, narcolepsy is often misdiagnosed, and even people who ultimately receive accurate diagnoses may find that medications used to treat narcolepsy, like SSRI antidepressants, can dampen their libidos. There’s not much research on how narcolepsy affects sex and relationships, and medical professionals don't often broach the topic with their patients. So people often struggle to find advice as they figure out how to manage their sex lives alongside the condition. 

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Over the last few years, people with narcolepsy have started to publicly speak about  their experiences with sex. However, these stories are still few and far between. So VICE recently spoke to Liam and Isabelle,* two people with narcolepsy who’ve been together for several years, about how they manage sex alongside the condition. 

VICE has changed Liam and Isabelle’s names to protect their privacy. This interview has been edited for length and clarity. 


Liam: As a child, I could fall asleep anywhere, anytime. I always had vivid, weird dreams, and it was hard to wake up. When I hit puberty, those symptoms got worse. I felt exhausted all the time—like I was stuck in a semi-conscious state. When I turned 18, I decided not to go to college because I knew I wouldn’t be able to wake up for classes and I didn’t want to waste money on lessons I’d never make it to. 

After losing many jobs, I got lucky and found a business run by a guy who was understanding. He was fine coming to my door some mornings and knocking until I got up to come to work. That job gave me medical insurance for the first time in my adult life, so I finally saw a psychiatrist at age 24. I was hearing unintelligible voices, seeing things moving in the corner of my vision, and hallucinating sleep demons and giant spiders. I thought I was going crazy. 

That psychiatrist thought I was very tired because I was depressed. I was depressed—but it was because I was so tired. He gave me antidepressants, but they didn’t help. 

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Then, my partner at the time, who was coming to sessions with me to help give the doctor context, mentioned how difficult it was to wake me up, how I sat upright in the middle of the night and babbled, and how I sleepwalked into the kitchen and smeared peanut butter and mustard on the counters. The shrink called a neurologist, and later that neurologist sent me to a sleep study, after which I got a narcolepsy diagnosis and a stimulant medication. The diagnosis was a revelation—but as I realized the medication might help with my symptoms, but wasn’t going to totally cure me, depression set in again. 

Isabelle: Because I didn’t get good sleep while I was growing up, I don’t remember many things from my childhood, including what my narcolepsy symptoms were like. I do know that I had sleep paralysis every morning—but I thought that’s how everybody woke up: First your ears wake up, then your eyes, and then your body. 

My grandparents, who lived with my family and helped to raise me, had so much patience with my tiredness. But when I became a teenager, my symptoms got worse—and my parents and I moved to a different city, away from my grandparents and their support. I didn’t have the energy to do things I enjoyed, or even to get through the day. I missed a lot of high school because I couldn’t get up in the morning. I almost didn’t graduate. I also have mild cataplexy, which makes my muscles go limp when I feel something extreme.

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Liam: I have cataplexy too. It can set in suddenly, like if something startles you. 

Isabelle: I’ve dropped entire meals because my hands suddenly go weak. I’ve had a couple of episodes where I collapsed onto the floor, felt electrical pain shooting down my spine, and couldn’t move—and then, usually five minutes later, I got up and walked away like normal. 

I knew something was wrong, but I was a kid and I didn’t have total control over my health decisions. Once I turned 18, I sought medical help. But none of the doctors I went to could figure out what was causing my symptoms. One told me there was nothing wrong with me, which made me so frustrated I started crying. When he saw my reaction, he prescribed me antidepressants, but I kept crying. So he reluctantly agreed to refer me to a neurologist. About a year later, I was able to do a sleep study with another set of doctors. They told me it was pretty obvious that I have narcolepsy. 

I started going to college and working part time. But even after I started getting help for my narcolepsy, I’d still go into microsleep during lectures and not remember anything. I wasn’t bored; I loved studying. I’d just black out—completely sober. Eventually, I had to drop out. 

Liam: I don’t like calling it blacking out, because people already think I must be on drugs, the way I go in and out, sometimes just staring ahead. But microsleep is an issue for me, as well. 

Isabelle: Right. If I explain it in more detail, I say it’s like my brain is glitching out. 

Liam: My narcolepsy has created challenges in all of my relationships. It was a deciding factor in the end of my second marriage. Some of these difficulties have to do with how the condition affects my sex life. 

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During foreplay, I’ll be excited and engaged. Then I’ll feel something strong and have a full cataplexy episode. That usually triggers sleep in my case, so I pass out during sex. You wanna see somebody take something personally? Do that. 

Also, my constantly tired mind is a complete asshole. Like, I’ll be having sex and thinking, everything is wonderful, I’m getting close… 

My mother’s face! 

Isabelle: Or, like, a demon dog, yeah. 

Liam: Or my mind will start bouncing all over the place. Then I’m not getting there. If I fall asleep, it’s also not like I’m going to dream about sex and stay aroused. I might dream briefly about being eaten by lizard people. When I wake up, my erection is usually gone. 

Sharing a bed with someone with narcolepsy can be a problem, too, because we move around a lot. 

After my second marriage fell apart over issues like those, someone asked me if I was going to get married again. I said, “It’d take somebody very understanding to make it work—or another person with narcolepsy.” Then Isabelle came along. 

Isabelle: I didn’t have much sexual experience before I met Liam. I’d never even consciously thought about how the condition might affect my sex life. But, in retrospect, narcolepsy played a role in my lack of interest in pursuing sex. It’s so hard to wake me up. I once slept through an earthquake and an evacuation of my apartment building. When you can sleep through that, you’ve really got to trust anyone you sleep with: I had this constant fear about sharing my bed, and this feeling like I needed to take extra care. I never felt comfortable enough to take things to a sexual place with anyone—until I met Liam. 

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Liam: I don’t know why she trusted me in particular! 

Isabelle: [Laughs] We were in a narcolepsy support group together and I found him interesting, so I asked him out. I had trouble waking up the morning of our date, so I showed up two hours late. But he was still waiting for me. We talked for five hours. When he offered to walk me to my car, I couldn’t remember where I’d parked. We spent another two hours looking for it. I thought, Well, this guy’s never going to call me again. But he did, the next day, and we started talking about our lives on the phone for at least an hour every day. 

Liam: We lived a few hours away from each other, so we didn’t have an opportunity to get physical until about four months later. 

Isabelle: We had a good connection by then. Liam warned me about things that could happen during sex with him, like him falling asleep. But when we started having sex, it just worked. We’d have sex. Then one of us would fall into a microsleep, or Liam would have a cataplexy episode and fall asleep. But usually, when one of us falls asleep, the other goes to sleep right after. Then we wake up and we’re like, Do you want to finish? OK! So we try again, fall asleep again, and wake up and try again until we’re finished having sex. It’s no big deal. 

Liam: Yeah, Isabelle’s never gotten mad at me for that, like my previous partners, which is great. We do have different arousal cycles, though. I’m usually horny in the mornings… 

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Isabelle: I’m pretty much horny 24/7. If I had my way, I’d have sex five times a day. But my mind is usually focused on all the things I have to do during the day in the mornings, so it’s harder for me to really get into sex. We’re both so short on energy all the time that, when one of us has the energy and feels up for sex and the other person doesn’t, it can be quite frustrating.  

Our solution has been to take all of Saturday for sex, just starting and stopping as we need. 

Liam: Sex does take a good amount of time for us. 

Isabelle: We can’t have quickies. But I think we’re OK with that. 

Liam: Sometimes, though, my mind will wander and my physical sensitivity just disappears. 

Isabelle: And then you can’t finish, yeah. That can be frustrating for both of us. But we’re both practical people, so when that happens, or on the occasions when one of us falls asleep and the other doesn’t follow right after, if the other person’s still feeling horny, we’ll just masturbate. 

I have taken it personally when things go wrong during sex once or twice, though. 

Liam: I honestly can’t remember what those circumstances were. 

Isabelle: Me neither! [Laughs] That’s one of the good things about narcolepsy: Sometimes we fight about small things and then just forget about them entirely, and aren’t angry anymore. Also, if one of us is kicking and screaming in our sleep, the other won’t be disturbed and will stay asleep. 

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Liam: I’m sure there are other things we’ve had to adjust about our sex life to accommodate our narcolepsy, but we aren’t really conscious of them, it’s so automatic—like positioning.  

Isabelle: Yeah, if one of us has a cataplexy episode in the wrong position …

Liam: Well, my penis might get pulled in strange directions real fast. 

Isabelle: We figure out what positions feel safe and comfortable as we go. We work well together. We’re still trying to find ways of better matching up our energy and arousal, though. 

Liam: We’re also still trying to figure out how to explore kinky sex. We have restraints that we’d like to use, but we’re worried that one of us is going to fall asleep and the other will be stuck in an uncomfortable position until they wake up—which could potentially be quite a while, because after a cataplexy episode I can pass out for upwards of an hour.  

Isabelle: I did recently try putting on rope restraints by myself to see if I could get out of them on my own in case Liam ever fell asleep while I had them on—and I can! So, I think those ropes are safe to use in certain ways, at least. We definitely can’t use any restraints that use keys, though.

Liam: Yeah, we don’t want to end up a local news horror story. I’m also really big on hygiene. 

Isabelle: If we use tools or toys during sex, they need to be cleaned right after use. 

Liam: But we might just fall asleep and forget about them. 

Isabelle: We need to figure out how to use things without neglecting them, basically. 

Liam: When at least one person has narcolepsy, the key to anything in a relationship is patience.

Isabelle: And talking to your partner, calmly and clearly, about whatever’s going on. 

Liam: Of course, those things are important in any relationship.

Isabelle: But I think they’re especially important in a relationship like ours. 

Tagged:

Health, Sleep, This Is How We Do It, body, Narcolepsy, mind, antidepressants, SSRIs, sleep disorders, cataplexy, chronic health conditions

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