What it’s like to have narcolepsy

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Carrie-Ann Burns, 26, is a narcolepsy advocate and self-employed photographer and pet-sitter in Hamilton, Ont. She has created several narcolepsy Facebook groups, including People with Narcolepsy Pen Pals, Canadians With Narcolepsy and Helpful Narcolepsy Information. Her story is told to Wency Leung.

During high school, I’d keep falling asleep in all my classes. Sometimes I’d fall asleep standing up. It was hard for me to wake up in the mornings to go to school, so I’d be late or miss days entirely. Sometimes, I’d wake up after the bell had rung for lunch, and it would be just me and the teacher sitting there, and she’d be looking at me very perplexed.

It took a few years to actually get a proper diagnosis. I didn’t think it was a real disorder just because you never really hear of anyone having it. It pretty much affects all aspects of life: your mood, your energy, your physical fitness, your social life, the way your brain works in terms of comprehension and retaining information.

There are different types of sleepiness with narcolepsy. There’s microsleep, which kind of just hits you and sometimes you don’t even realize you’ve just slept for like a second. It can actually bring hallucinations into your everyday life because you’re kind of awake and asleep at the same time. Then there’s head-bobbing, where you doze off and then you wake up again. Sometimes you can predict when it’ll happen and sometimes you can’t. I understand myself a little bit better now, so when I get this heavy feeling over my body, it’s time for a nap. If I’m not able to have a nap, I’ll chew gum or eat a candy or start moving or start a conversation with someone to keep me alert.

There are other times, such as if I’m sitting on a couch, I can’t really tell that I’m going to fall asleep because I’m already relaxed.

Someone with narcolepsy, if they’re having a really bad day, or they’re stressed out about something, that’s going to make them more tired, so they can have sleep attacks.

There are a lot of treatment options for narcolepsy; there’s a stimulant I took for about three years, and there are antidepressants that can be taken for the side effects of narcolepsy, and then there’s sleep medication so you have a more refreshing sleep at night. People with narcolepsy, we sleep a lot more than the average person, but we don’t get that restorative sleep that gives us energy and promotes restfulness, which is what makes us so tired.

At first, I kind of based my life around it. You almost feel like a prisoner in your own body because you can’t do the things you loved to do or were able to do before you were affected. It did cause issues with friendships because friends just couldn’t understand why I couldn’t stay up late or do things in the evenings, which unfortunately, is when a lot of people like to be social. With relationships as well, sometimes you want to stay in and not really do anything and that puts a toll on other people.

I’ve tried to work normal jobs. I worked at a movie theatre, where I fell asleep many times standing up. I worked recently at a record-pressing factory, which was a pretty physical job, but you’re standing and doing pretty repetitive motions with your arms, so it kind of puts you in a trance. I would have microsleeps and dozing, where you’re head’s nodding, all the time. It happened more than 45 times in one day. I actually counted.

So I find a lot of self-employment jobs are the best because you can set your own schedule and if you’re having one of those random, really bad days, you can just stay home and do what you can from home.

I try to have my days planned out because I want to make sure I’ve enough sleep to, say, take a bus somewhere. If I don’t, I get anxious. But you kind of have to just learn to let go and let life happen.

This interview has been edited and condensed.