What People Don’t Understand About Narcolepsy

By Amanda Myers, as told to Stephanie Watson

I was one of those kids who had a 20-year plan. My plan was to be a civil rights attorney -- to advocate for those who didn't have a voice. But when my grandmother got sick and my family needed my tuition money to pay for her care, I left college in Alabama, moved back home to Florida, and got a full-time job as a bartender in a country club.

At the time I was 19 or 20. That's when I started to get really tired. I'd have a hard time staying awake when I drove home from work. Friends brushed off my worries. "You're working longer shifts," they’d said. "Anyone would be tired."

My parents thought stress was getting to me. At the time I was also training for competitive weightlifting. My stepdad said, "You need to take some things off your plate."

So I did. I adjusted my work schedule and cut back on my shifts. I tried drinking less coffee, then more coffee. Nothing seemed to make a difference. In fact, my sleepiness got worse. I was like a zombie.

Asleep at the Wheel

It got to the point where I couldn't drive during the day without falling asleep. Once or twice a week, I would wake up on the side of the road. Often I'd be awakened by the sound of horns honking at me because I'd veered into oncoming traffic.

Then the hallucinations started. I would see my dog running across the road, and I'd swerve to avoid him. The little green army men from the movie Toy Story appeared all the time.

My moment of reckoning came when I swerved while asleep behind the wheel and almost clipped the side of an overpass bridge. Just the thought of falling off that bridge made me realize that this wasn't OK. I needed to see a doctor. 

Continued

"Maybe It's Narcolepsy"

When a doctor listened to my symptoms and suggested, "Maybe it's narcolepsy," it was the first time outside of the movies that I'd heard that term. I had to see two other doctors and get a sleep study to confirm my diagnosis. The third doctor put me on a treatment plan of stimulant drugs and regular naps.

Two years into my diagnosis, I've learned that treating narcolepsy is like a dance. Even though my treatment is working now, I fully expect that I'll have to adapt and adjust it as my body evolves.

But for now, I'm doing well. It's safe for me to drive again. I'm stronger than I have been in 5 years, and I'm able to weightlift competitively. My chances of getting a national title look pretty good.

Narcolepsy Isn't What You Think

I've always been pretty open about my diagnosis. When I tell people I have narcolepsy, I always expect to get a comment that will hurt my feelings because it's happened so many times.

The first thing people say is, "So you always fall asleep, whenever?" Not exactly. Though it might seem like people with narcolepsy are constantly falling asleep like you see in the movies, it's really that our bodies can't regulate the sleep-wake cycle. In fact, people with narcolepsy have trouble sleeping at night.

Another thing people say to me is, "You should feel lucky. I wish I could take a nap whenever I want." They don't understand that I don't want to take naps. The naps take me. It's not a choice. It's a full-body fight to stay awake, and my body is telling me, "No, you're going to sleep right now." Probably the hardest thing for me is that when you have an invisible illness like narcolepsy, people don't believe it's a real condition.

Some of the comments I get are hurtful. I'm studying to become a veterinarian, and when I told one of my classmates that I have narcolepsy, he said, "How do you expect anyone to let you work on their animals when there's something wrong with you?"

Continued

One of the biggest misconceptions is that we're hindered. I don't view myself as being hindered in any way. Quite honestly, I think my narcolepsy is the coolest thing about me. I think once we start to destigmatize the idea of narcolepsy and tell people what it is, then maybe they won't be so scared of the word.

Some people believe narcolepsy is a really rare disease. It's not rare; it's just misunderstood. We don't know a lot about it, but it's out there. When I talk to people, they say, "Wow, I've never met anyone with narcolepsy." I think, "Yes, you probably have. You just don't know it."

How to Help Someone You Love

If someone close to you has narcolepsy, don't tiptoe around the conversation. For me, it's more uncomfortable when someone is scared to talk to me about it. I'd prefer they ask me upfront, "Does this mean I can't ask you to go out?" "Does it mean we can't watch movies until midnight?"

Remember that people with narcolepsy have good days and bad days. Check in with them. Ask, "How are you feeling?"

Some days I feel like crap and it's hard for me to have conversations, to put myself out there and do all my normal things. That might look like I'm being lazy, but I'm not. There are times when people with narcolepsy won't want to participate in life's activities, and that's OK. Let them have that day, but make sure that after that day, they get back to being every bit of unstoppable.

WebMD Feature Reviewed by Neha Pathak, MD on February 19, 2021

Sources

Amanda Myers, patient, Gainesville, FL.

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