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.
1) I physically can't stay awake
Most nights I sleep eight or nine hours. But I wake up often, sometimes every few minutes, so the sleep I do get doesn't feel restful.
That means during the day, I'm almost constantly drowsy and playing catch-up. I plan naps as I can, but as you can imagine, that's not always practical. And naps only reenergize me for so long, anyway. A few hours later, I'm still bound to feel like I pulled an all-nighter.
So some days I accidentally fall asleep in inopportune places, sometimes multiple times in a row — at my desk, in meetings, in movie theaters (almost always), you name it. The less active I am, the more likely it is I'll doze off for microsleeps or full-on unplanned naps.
The trademark of narcolepsy is not so much the stuff of sitcom gags, like falling asleep standing up (though I have done that) or face-planting in a bowl of soup (thankfully, I have not). There's usually some warning I'm about to crash as I feel exhaustion winning out over my determination to stay awake. So it's not sudden as people might think, but it is still inconvenient, disorienting, and occasionally embarrassing.
2) People assume the worst in me
The most frustrating part of the disorder isn't how the symptoms make me feel. It's that as obvious and constant as the symptoms are, my condition is essentially invisible to others. It sounds cynical, but most people really will not give you the benefit of the doubt. They see me sleeping, nearly sleeping, or just disengaged, and they form their own conclusions.
Instead of wondering if I'm sick, people are quick to label me lazy, bored, or rude. Teachers and friends often told me I wasn't "trying hard enough" to stay awake, even after I disclosed my diagnosis. A college professor chewed me out during class and asked that I sit closer to the front, a suggestion meant more to shame than to help.
I do what I can, but my wakefulness isn't ever fully under my control. Believe me, I'd like it to be. I don't want to disrespect someone trying to hold my attention. And I certainly don't want to have to queue up the same episode of Breaking Bad three times in a row because I can't stop nodding off. I have to constantly prove I do care about what I'm missing out on.
3) I've had to totally overhaul my daily routine
More than three years after getting diagnosed, I'm still figuring things out. Do prescription stimulants work for me? Do I feel better when I drink copious amounts of coffee or none at all?
I'm glad there are changes I can institute that make me feel better, but they're pretty sweeping. I can't just take a nap whenever I want in the middle of the workday. Going to sleep early is fine in theory but incredibly difficult in practice. Saying no to an extra hour out with friends is something I haven't mastered yet.
Every day I had to evaluate whether it was safe for me to drive. I fear my concerns look like flakiness.
Living in New York, I rely on public transit, but during stints in New Jersey, Florida, and Puerto Rico, places where a car is a must, every day I had to stop and evaluate whether it was safe for me to drive. I sometimes blasted the air conditioner and music, and always committed to pulling over when I felt unsafe. But when possible, I bummed rides from friends and family.
I fear my concerns present themselves as flakiness in my social life, but the boundaries I set are rooted in concerns for own my health.
4) My mental health suffers, too
Like many chronic illnesses, narcolepsy is linked to a higher prevalence of depression. I've experienced depression on and off since high school, seeking out therapists on a few different occasions. It's tough to pinpoint whether narcolepsy caused any of my sadness, but it's clear the disorder didn't help.
Narcolepsy makes me crawl into bed, and on some days, sadness and apathy keep me there. I have a built-in excuse to cancel plans and nap at weird times. When I'm down, it takes some serious effort to balance my need to rest with my need to be a functioning member of society.
5) I can't help but laugh
Because narcolepsy is a serious disorder, I'm wary of outsiders poking fun at it, especially in pop culture. Plot lines that exaggerate symptoms for laughs and bill the disease as fleeting — think Phil Dunphy on Modern Family — fall flat. For me, compassionate humor takes the tone of "Here's this weird thing you do sometimes when you're sick," as opposed to "Haha, you're sick!"
That said, a lot about narcolepsy is relentlessly funny to me. I see things that don't exist. I can fall asleep while doing just about anything. My favorite movie is The Graduate, and my affinity for it is clearly obsessive. Even so, it still took me three screenings before I stayed awake long enough to witness Benjamin Braddock break up that wedding in style.
My friends, many of whom like to text me photos of myself sleeping, don't let me forget that I look silly. Through them I've learned that being a friend to someone struggling, with narcolepsy or anything else, is about poking fun without dismissing and understanding without coddling. What keeps me going is the constant reminders that absurdity and illness don't need to be mutually exclusive.