Lead illustration by Ben Ruby

What It’s Like to Have Narcolepsy and Go Through Life Tired AF

"I can’t go to a movie theatre without falling asleep.”

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Mar 24 2017, 4:44pm

Lead illustration by Ben Ruby

Everyone knows a night without sleep is hellish. You feel physically drained, you can't think or react quickly, and you're generally in a shit mood.

But what about a life without proper sleep? To some extent, that's what people with narcolepsy go through.

Narcolepsy is a neurological sleep disorder that messes up the sleep cycle, causing people with the condition to be extremely sleepy during waking hours. It affects about one in every 3,000 North Americans.

According to the US-based National Institute of Neurological Disorders and Stroke, people with narcolepsy experience "sleep attacks"—irresistible bouts of sleep—that can strike at any time and last from a few seconds to minutes. People who additionally have cataplexy can lose control of their muscles—causing a person to freeze or collapse.

In short, people who have narcolepsy don't get much sleep and when they do sleep it's rarely of good quality. There is no cure for it.

VICE asked Claire*, a 26-year-old Torontonian who was diagnosed with narcolepsy four years ago, how she copes without ever really feeling rested.

VICE: What were your sleeping patterns like growing up?
Claire: When I was younger, I didn't really have a bedtime. My mom has a sleep disorder, she basically doesn't sleep. Because of that we didn't really have much discipline in that way. When I was seven, I went through a really bad accident and I got third-degree burns and I was in the hospital. I was on morphine for a month. It was a pretty traumatizing experience. I know a lot of people who have narcolepsy go through this kind of thing.

So did that mess up your sleeping?
I don't really remember a lot of that growing up, but I've always always always been extremely fatigued and I just know that I would wake up a lot in the middle of the night.

When did you start to realize it was something you should get checked out? 
In second year university was when I started realizing I was having really bad mental breakdowns and instability. That's when I realized I need to go to a therapist, I need to go to a doctor. I just thought there was something wrong with me like a mental disorder.

But what exact symptoms were you experiencing? Were you falling asleep randomly?
I was falling asleep in all of my classes basically. One of my profs would notice it and I would get into shit for that. Movies are hard for me to watch because I can't go to a movie theatre without falling asleep. I remember watching my first 3D movie— Beowolf—and falling asleep. I saw all three Lord of the Rings and fell asleep through all of them.

Have you ever fallen asleep in an embarrassing time?
Oh my god, so many times. In first and second year chemistry exams, I completely failed those. I fell asleep during a lot of talks in university, even though I would speak at them later. I've fallen asleep at bars. I fell asleep at a show once.

What about during sex?
Not because of narcolepsy.

So what happened when you went to the doctor?
They made me do a sleep test and then a multiple sleep latency test to narrow it down. They realized I had sleep paralysis during the initial test. I woke up eight times, I slept a total of five hours. They just thought I had chronic fatigue but after I did these tests they found out that I had narcolepsy. I don't have cataplexy. All of my sleep stages blend into one big phase.

Provigil is a common drug taken for narcolepsy. Photo via Jamais Cascio/Flickr

How did you feel after getting the diagnosis? 
I think because a lot of people don't realize that they have it, it was a weird diagnosis that I didn't believe.

What would be different if you had cataplexy?
With cataplexy someone could be laughing and all of a sudden their body could just buckle down and fall. I've never experienced that, like my body completely falling asleep and losing control. I can do things like drive or walk or have sex without falling asleep. But with movies or reading, my body just can't stay awake during that.

How do you treat the narcolepsy?
I have major depressive disorder and panic disorder. They asked if I wanted to treat the mood issue first or the sleep issue and I said the mood issue. At the moment, I take anti-depressants in the morning. I take Wellbutrin, I take a double dose of the normal baseline dose for depression. It helps with mood but it has stimulant like effects that so far with my narcolepsy has helped me enough that I can come to work. I'm going back to res-assess cause I think i would like to take something more targeted.

Are there any side effects?
I'm very anxious throughout the day. If I miss a day of it or only have half a dose of it I get anxious sometimes but generally otherwise no. I think the times when I'm anxious are the times when I don't get sleep.

Tell me about your sleep paralysis.
The sleep paralysis was when I first noticed this all going on. It was one of the most terrifying things ever it was like I was lying on my back. I woke up and I had my eyes open and i didn't understand why it felt like there was screeching in my ears and there was something pressing down my chest down and I saw a shadow figure in my closet. I tried to scream my sister's name cause she was in the room next to me but I couldn't. After that it started happening more and more.

Read more: Rodney Ascher's Doc 'The Nightmare' Reveals the Real-Life Horror of Sleep Paralysis

What about your dreams? 
If I'm really stressed out or I pull an all nighter I'll pretty much always get lucid dreams. I never really have the lucid dreams people want to have where it's like I can control everything in my dream. It's just that I'm present for it. I'm half awake but I'm also asleep. I still have the judgment I would normally have. The crazy dreams are things like, I'm terrified of flying and heights and those are the things I dream about a lot and lucid dreaming in those dreams is very, very, very scary. It's like I need to figure out what to do and it's super stressful.

How much sleep do you get in a night?
Five or six hours. If I go to bed at 11:30 and get up at 8:15, I don't know if I'm going to feel good or not. I always feel tired when I wake up, but some days are easier than others. Waking up used to be impossible, it was very very painful mentally. It was very, very, very hard before medication and I still experience that too.

Anything else you wanted to mention about narcolepsy?
The biggest thing I definitely want to mention with it is how closely tied it is to my other issues and how contingent it is upon my mood. I guess another thing is that it's sometimes really hard to talk to people about because people don't believe you. It's super underreported. I've realized how easy it is to overlook it and it's something that if anybody I know that has these kinds of issues I always encourage them to check it out.

*name has been changed to protect privacy

This interview has been edited and condensed for clarity and style.

Follow Manisha Krishnan on Twitter.

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