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I have narcolepsy, and I hate that people think I’m just lazy

 

It’s a cycle that started when I was 16 years old: I fall asleep, awaken just as abruptly, and immediately scan the room for clues. How long was I out? Who noticed? Before I can finish evaluating, I’m drifting off all over again.

I didn’t seek out a sleep specialist and get diagnosed with narcolepsy until months after I turned 20, even though sleepiness had disrupted my schedule, happiness, and general state of mind for years. I repeatedly wrote off a legitimate medical problem as me being an irresponsible student, or not trying hard enough to stay awake.

What ended up putting me over the edge wasn’t the sleepiness at all, but the hallucinations I had started getting as I woke up from unplanned naps. In my first hallucination, I saw a particularly intimidating acquaintance of mine towering over me. I often see my skin as different colors. Sometimes my hallucinations were accompanied by what I later learned was muscle paralysis, a fleeting inability to move.

INSTEAD OF WONDERING IF I’M SICK, PEOPLE ARE QUICK TO LABEL ME LAZY, BORED, OR RUDE

After confirming with friends and family that no, frequent hallucinations aren’t normal, I went and got a sleep study done. My first reaction to the narcolepsy diagnosis, before the seriousness of having a lifelong medical condition set in, was validation. I was excited to share the news as a way of justifying years of behavior I and others had thought inexplicable.

The high school statistics teacher who once sharply called me out for drooling on my desk, the boss at a volunteer organization whose weeklong orientation I slept through, the ex-boyfriend who couldn’t keep me awake during movies — these were all people I finally had answers for.

My experience with narcolepsy isn’t representative of everyone’s. By some estimates, there are 200,000 people with narcolepsy in America, and 3 million in the world: we all have a different combination and severity of symptoms. For example, I don’t have cataplexy, which entails sudden, often terrifying losses of muscle tone brought on by emotion. But here’s what it’s felt like for me to live with the sleep disorder.






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