I'm Living With Narcolepsy, and It's Not a Joke

I expend a great deal of my energy every day trying not to look sick. I dress well, stand up straight, and never leave my apartment without a full face of makeup. I'm a pro with concealer on dark circles. But the truth is, waking up in the morning is excruciating. I can’t do much before I take my medication, which kicks in with a feeling like my power switch has been flipped on. If I’m not ultra-careful about my diet, my mind is foggy most of the day, and by three in the afternoon, I feel like I could fall asleep at my desk—which I mean literally. For most of my life, I thought this was what everyone else called “the afternoon slump.” Except it doesn’t go away after I take a nap. Plus, most people don’t start slurring their words when it happens to them.

This isn’t a walk in the park, but it’s what my online support group calls “sleep attacks” that do me in. Similar to cataplexy, these attacks are triggered by a moment of intense emotion. For me, it’s stress. I can feel an attack coming on in my arms first. They feel light and tingly, but they also become so heavy I can’t lift them up. I have to sit down right away. If it gets worse, I can’t think, speak, or stand. I don’t necessarily fall asleep, but it’s better if I lay down; I usually pass out.

Even in these circumstances, I try to set several alarms on my phone to bring me back. If left uninterrupted, I can sleep for 12 hours or more. I may feel better when I wake up, but sometimes the alarms feel like whiplash, and a hazy weakness will keep me confined to my apartment for days.

Because of these attacks, I had to quit my job teaching high school English; daily interactions with students and administrators pushed me to the brink many times. I have had to cut back on online dating too. Last time I joined Bumble, I matched with more than 60 guys, and the countdowns—you only have 24 hours to message a match or you miss out—caused a panic that left me practically unable to function. I had to delete the app. See, narcolepsy messes with my dating life even before I can get a date.

The last time I had an attack, I was supposed to get on the phone to help two of my friends sort out a disagreement. But the stressors of that day piled up, and I couldn’t. I apologized and told them about my condition. One texted right away, with a thoughtful and concerned message. The other took longer to respond, finally sending a hurtful missive that sounded like she thought I was just making excuses.

I’ve learned this is a typical response when someone doesn’t understand narcolepsy, which many don’t. It's why I joined a private Facebook group for people with narcolepsy, and I cling to the community I've found there.