By Julia Enthoven, as told to Rachel Ellis
When I was 16, I started falling asleep during all of my high school classes. I was an excellent and engaged student, so the sleeping didn’t make sense.
At first, it was kind of funny. People would kid me about needing more sleep, and even I figured I was just tired from being too busy.
Then one day I fell asleep at the wheel and drove through a red light. I was jolted awake as a car whizzed past me. Thankfully, I didn’t cause an accident. I told my mom about it when I got home, and that’s when she decided it was time to take me to a doctor.
My sleep study results came back loud and clear: I had narcolepsy.
How It Works
It takes most people about 7 minutes to fall asleep. I’m out after an average of 19 seconds. Luckily, my treatment has been very effective in curbing my daytime sleepiness.
Feeling sleepy is different from feeling tired. Feeling tired is like an overall fatigue, low energy, and slowness. Sleepiness feels like “I need to nap right now.” Narcolepsy makes me sleepy. I can feel sleepy even if I'm not tired, and vice versa. After I've taken my pill and had my coffee in the morning, I feel great, alert, and productive. Then as my pill wears off around 4 p.m., I start to droop.
When I'm alone, there's very little I can do to keep a nap from coming on. Driving is the most dangerous time to feel it. I can turn the music up, roll the windows down, and try all kinds of different things, but ultimately the only strategy that really works is pulling over to sleep. Another thing that sometimes works is getting into a really compelling conversation. That can sometimes keep me alert. But otherwise, there's just about nothing I can do to force myself to stay awake.
My episodes start with a little bit of a headache. It’s like a drowsiness in my brain, near the front of my head. Within 3-5 minutes, my eyes start feeling heavy. I begin to blink more, and my eyelids gradually get heavier. That's how I know I need to nap.
If I fight it by really trying to stay awake and keep my eyes open, my headache will get worse. I could probably hold it off 10-15 minutes, but then almost certainly I'll fall asleep.
Fighting It Off -- and Not
I'm the co-founder/CEO of a startup company called Kapwing, and during an afternoon interview with a client, I started having trouble staying awake. I noticed my headache and heavy eyelids and that I was taking fewer notes. I wasn’t able to track, follow, or remember what people were saying.
Because I knew I wasn't really able to engage, I excused myself for a bathroom break. I splashed my face with water and got a soda with some caffeine in it. The combination of the sensation of the water and walking around for a minute helped me, and I was able to sit down and engage for a little longer.
Sometimes, sleeping is the only way to get relief. And I only need 5-10 minutes to feel totally rested and alert again. If I’m in a time crunch or a situation where I really don't want to be sleeping but need to, I'll set the timer on my phone for 5-8 minutes and then let myself just completely fall asleep and wake up feeling completely rested.
But there are still times I nod off unintentionally. When that happens, even if the sleep refreshes me, I feel really embarrassed and ashamed when I come to. And also, I’m not sure how long I've been asleep or what I might have missed. It’s a stressful feeling.
The Good and the Bad
My friends and co-workers who know I have narcolepsy are all very accommodating. I never feel ashamed or hindered by the fact that I have it when I’m around them, because I can take whatever steps I need to address it.
I've found that my narcolepsy is a little bit more of a hindrance for what I would call loose-tie acquaintances: professors whose classes I’m in, people in interview settings, or random new social acquaintances who don't know me.
I would say the blessing of narcolepsy is that I can fall asleep very quickly and I have a sound understanding of what situations make me sleepy. I know how to take a nap if I need to. And I’m grateful to have people in my life who know me really well.
When I was in college, it was much harder to deal with narcolepsy than it is now. Narcoleptics who are in college should know that it gets better in your adult life. You have more say in when and how well you sleep, as well as your living situation. Now that I have more control over those things, I have a much easier time managing my condition.
Julia Enthoven, 27, lives in the San Francisco Bay Area. She's a Stanford grad and co-founder/CEO of Kapwing, an online video and photo editing platform. She frequently shares her story of life with narcolepsy and how it affects her work in an effort to connect with others in the tech industry who are dealing with health issues.