When “falling” in love is a literal problem
Sarah Rose // Features Editor
“Sleeping around” takes on a whole new meaning when living with the neurological disorder called narcolepsy. Navigating the confusing world of intimate relationships is hard enough as it is, but studies show that throwing a chronic disease into the mix dramatically lowers the chances of romantic success. In the case of narcolepsy, falling can happen quite literally—although not everyone who suffers from it experiences this abrupt loss of voluntary muscle tone that is commonly associated with the disease. Medically referred to as cataplexy, its symptoms range from minor (knees buckling, head nodding) to severe (sudden onset of paralysis). The problem with cataplexy is that it is usually triggered by emotional arousal—a bit problematic when falling in love (which is arguably the most intense emotional arousal there is). There is also the misconception that people with narcolepsy “fall asleep” when they experience intense emotions. Rather, they experience the paralysis that is characteristic of REM sleep while being fully conscious.
Neurotypical brains sleep in a series of cycles through non-rapid eye movement (REM) to REM and then back again. It usually takes about 90 minutes to get to the REM cycle which is characterized by muscular paralysis that prevents us from physically acting out our dreams. But since we are already asleep, this paralysis is usually irrelevant. However, the brains of people with narcolepsy can abruptly and unpredictably enter REM and experience cataplexy which is usually and inconveniently brought about by certain triggers, like sexual desire. Sufferers have described this paralysis as terrifying because they are awake but unable to move.
Reilly Johnson, a 22-year-old University of British Columbia student with type 1 narcolepsy says that in order to avoid cataplexy episodes, he removes himself from emotionally stressful situations. “I try my best to explain to everyone beforehand that it might happen. To me, sitting in my room listening to music is always healthier than a cataplexy episode. I say this because emotionally, it’s already terrifying, but then people around you are scared—to the point one of my ex’s would just break down and cry every time I had an attack—and you just are there listening to them panic or yell or continue their [emotionally] charged argument.”
For people with any kind of chronic disease, the decision to disclose their condition to prospective romantic partners can be hard. For those who suffer from narcolepsy, it is essential because symptoms can be both physically dramatic and dramatically misunderstood. Johnson feels that it is important to make his condition public because narcolepsy is one of those “mostly invisible” diseases—invisible until something, like cataplexy, happens.
“I have always been very upfront with everyone in my life about my narcolepsy and it’s one of the first things I talk about after getting to know someone I’m interested in. I put it in my bio on Tinder and Instagram and wear a bracelet everywhere so it’s not like I try to hide it,” he said. “I would say that telling people about my narcolepsy is very important and is a great first step in the direction of a healthy relationship.” Though, he does concede that, “there is a lot of anxiety and loneliness that comes with having narcolepsy as there is a lot that feels taboo to mention.”
Although cataplexy may be the most dramatic symptom of narcolepsy, the most frustrating symptom may be Excessive Daytime Sleepiness (EDS). Imagine not being able to stay awake when you want and need to—or as you develop a personal relationship with a romantic interest, not being able to stay awake when your partner wants or needs you to. And then there is the worst-case scenario of finally achieving an intimate exchange with a person and, suddenly and inexplicably, falling sound asleep. EDS can produce feelings of isolation because the symptoms can be interpreted as laziness and due to symptoms often beginning during puberty, it is easy to dismiss them as normal adolescent behaviours. This is one of the reasons that people with narcolepsy usually wait 8-15 years for a diagnosis.
Johnson thinks it is important to keep a sense of humour about his condition which helps him combat some of the anxieties that accompany the work of forming romantic relationships. “I’ve had lots of funny experiences, most of them involve me falling over when someone says something emotionally charged. Like the first time, a partner of two years told me she loved me, I just passed out in her arms in bed instantly. I’ve had people hit on me while I’m dancing and suddenly, I get cataplexy and a knee buckles and I just flail around like I intended to do that.”
Like other people with narcolepsy, Johnson depends on drugs to avoid cataplectic events, to stay awake during the day and to sleep at night. The side effects of these medications can be difficult to manage at the best of times. However, when the “best of times” includes a relationship, juggling both drugs and intimacy is a challenge that can get in the way of fostering the profound connections we seek when we look for a romantic partner. Johnson has tried various medications to help manage his symptoms—including trialing different amphetamines to help him stay awake—but he found that some side effects were unmanageable and none of the drugs perfectly controlled his sleep/wake cycle. To help him stay asleep at night, he takes a prescription called Xyrem or GHB.
“If you truly have narcolepsy and you don’t get awful side effects, this is like night and day in terms of difference,” he said. “You do have to wake up after 4 hours to re-dose, and even though it tastes like someone collected all the juice from the bottom of a dirty gym towel bin, the effects come on very rapidly and it usually knocks me out cold for two and a half to four hours.”
While medication does help reduce some of the more debilitating symptoms of narcolepsy, it can also have terrifying side effects, especially for those starting the drug for the first time. Johnson explains that if you don’t fall asleep after taking Xyrem, “you are in for a ride that you probably won’t remember. Effects during this “blackout period” range from excessive hunger, enhanced music enjoyment, hypersexuality—I do mean hyper—a general good feeling in muscles especially when moving, loss of all coordination—not a good mix those two—lowered inhibition, confusion/delirium and trouble getting thoughts out via words or writing. I have had times where I do my normal pre-bed routine, brush my teeth and tuck myself in and when I wake up, I have an ex in bed with me. This can be terrifying but fortunately, I’ve come a long way and things like that don’t happen anymore.”
Because of this vulnerability, Johnson says that the scariest step in any romantic relationship is not the first date, the first kiss, or even the first sexual encounter. It’s the first sleepover. “I’m exposing myself in a way that very few people ever see. I have to sleep with a machine and dose myself on Xyrem (GHB) because it really helps me the next day. I’ve definitely felt used and violated by people while on my Xyrem. It is essentially making you feel super drunk and super horny, so if you don’t sleep, you basically agree to anything someone else suggests. Obviously picking who gets to see me while I’m in that state is a big thing.”
Having narcolepsy tends to put a strain on romantic relationships but Johnson is quick to point out that a lot of the issues that ended both of his long-term relationships were due to communication or lack thereof and not his narcolepsy per se. Being able to effectively communicate your needs to your partner is a cornerstone of any successful relationship, chronic diseases or not. Trying to form long-lasting, meaningful romantic relationships is hard work, but if you have a chronic disease like narcolepsy the task can be monumental. Johnson would like to encourage everyone to be kind to each other because people are often struggling with issues that are not necessarily perceptible to the naked eye. “I’m hoping that by sharing a little about me that others can gain a bit of an understanding about narcolepsy and be a bit more understanding to everyone who has something going on, visible or not.”