Earlier this month, I wrote a story about the recent uptick in extra-long Instagram captions, and a Man Repeller reader commented that she uses them to share her feelings and connect with other people who have narcolepsy. That reader turned out to be Eleanor Wales, a 26-year-old Aussie graphic designer who agreed to speak with me about her experience living with an incurable sleep disorder. Below, her story.
I was diagnosed with narcolepsy when I was 17, during my final year of high school. The symptoms had been escalating for a few years, but at that point I was falling asleep in class and in the middle of exams, so I started thinking, “Okay, maybe this isn’t normal.”
I had mixed feelings when I got the diagnosis. It felt validating to a certain extent, because for years and years I thought I just wasn’t doing life right. I was sleeping much longer at night than any of my friends, but I still couldn’t stay awake during the day. I couldn’t study properly. I couldn’t socialize. I felt like I was failing as a person. When I was diagnosed, I was relieved all these things weren’t actually my fault, but it was also a big thing to wrap my head around. Narcolepsy has no cure. There was a bit of a grief element to accepting it. I grieved the loss of the life I imagined for myself, the things I wanted to achieve.
Extreme daytime sleepiness was one of the first symptoms I experienced. It’s different from how people imagine it, though (i.e. instantly falling asleep, face-first into a bowl of soup or something). It’s more like overwhelmingly bad jet lag. Like you can’t possibly stay awake, no matter how hard you try.
I also have cataplexy, another typical symptom of narcolepsy. In a normal sleep cycle, there’s a stage called REM sleep, which is when you dream. During REM, your brain paralyses your body so you can’t physically act out your dream, but if you have cataplexy, your brain paralyzes you when you’re still awake. Stuff like laughter or intense anger often triggers the paralysis because your brain interprets those intense emotions as dreams. My main trigger is laughter, but only certain kinds. Watching a funny TV show doesn’t affect me. It’s more of an anticipation type thing, like when I want to say something I think is really funny, or if I’m talking with a friend and we get into a loop where we keep making each other laugh over and over again. That’s the worst.
I used to hallucinate, which is common as well with narcolepsy. Since being diagnosed and getting treated, I don’t as much anymore, thank god. Some people think hallucinations sound cool, but they’re never cool. They’re terrifying. One time, I could feel something underneath my bed pushing up against my mattress, pulling my sheets off my bed, even though I was literally lying there, looking at my sheets, and I could see they weren’t moving. But I could feel them moving. It’s a weird, weird sensation.
I take medication to manage all of these symptoms. During the day, I take powerful stimulants (for comparison, a cup of coffee would be like a drop in the ocean), which help me stay awake for a few hours at a time. At night, I take a sedative, which allows me to get proper deep and restful sleep. The thing most people don’t realize about narcolepsy, and why a lot of people don’t take it very seriously, is that while narcoleptics might sleep more than the average person, our sleep is never actually restful. Medication is the only thing that can properly regulate my sleep phases. Without it, I would feel permanently sleep-deprived.
Learning how to nap effectively has been really important for me. It was a tough thing to get my head around at first; I have a full-time job as a graphic designer, and it feels counterintuitive to just drop everything I’m working on and go to sleep. But if I try to force my way through the sleepiness and stay awake, I’ll end up wasting hours, because my brain is half asleep anyways, so I have to be disciplined with myself. I’m very lucky to work for a small business, where the environment is pretty casual. Our team is only five people, and they all understand my situation, so I never feel weird about it. There’s a spare office where I have my own little nap area set up.
Sometimes people think it sounds so nice to nap all the time but I have to tell them it’s actually not nice at all. I’m only doing it out of necessity. My naps aren’t even particularly restful but my brain wouldn’t be able to function without them.
Maintaining a social life can be tough because it’s just another thing that takes up energy. I know that sounds really sad, but the reality is that narcolepsy isn’t the kind of illness that just “flares up.” It’s always there. I’m always thinking about it.
I’ve learned that it’s really not worth pushing myself to do stuff when I’m tired because it wouldn’t be much fun anyways. When I see my friends, I want to feel present, so if that means seeing them less and saving my energy for the stuff I actually want to do instead of saying yes to every little thing, I think that’s okay. Quality over quantity! My friends understand, so that’s nice.
Dating adds a whole other element. The moment I bring up narcolepsy, I have to be prepared to have a long discussion about it, and then suddenly the date becomes all about my narcolepsy and not about me as a person. I struggle to find the right balance between explaining how difficult it can be and assuring people I can and do lead a fairly normal life. I’m still an interesting and capable person despite having narcolepsy, but I also don’t want to belittle it. I have to work really hard to maintain a level of health that most people take for granted. Sometimes managing the disease feels like a full-time job, but because the symptoms are all pretty invisible, nobody knows how hard I’m working just to keep up.
That being said, if I ever need to end a bad date, I can just say, “I’m so sorry, but I’m literally going to fall asleep at the table,” and they have to take me seriously [laughs].
Before my diagnosis, people would make comments about how I needed to pull myself together and “stop being so lazy.” I was quite depressed as a teenager because I was often made to feel like I wasn’t trying hard enough. I still struggle with the stigma, always questioning if I’m actually too tired to do something or if I just think I’m too tired because I have narcolepsy. More often than not, I really am too tired. There’s such a premium on productivity these days, to the point that over-tiredness has become almost glamorized. People brag about not getting enough sleep and driving themselves the point of exhaustion. It’s taken a lot of time and effort for me to finally accept that not only do I need rest — I deserve it. Being exhausted isn’t cool. Taking care of myself is cool.
My involvement in the narcolepsy community has really helped me get to where I am now. Narcolepsy is a rare condition (only 0.05 percent of the population are affected by it — one in 2,000 people), so I don’t just fortuitously bump into other people who have it. The feeling that part of it was my fault and I should just be “trying harder” didn’t go away until I got to know other people who were having the exact same experience. It put everything in perspective. I finally accepted that my inability to accomplish certain things has nothing to do with me as a person; it’s simply the result of medical condition I happen to have.
Social media has been an incredible outlet as well. I make a point to try and put all my emotions out there on Instagram and my website, good and bad, so other people with narcolepsy might feel less alone. Sometimes I worry that it seems like I’m always complaining, or that it won’t be relatable to other people, but then I get comments from other narcoleptics who tell me how much it’s helped.
I’m a naturally shy person, so I’m always trying to push myself further out of my comfort zone. I know I am privileged compared to many other people with narcolepsy; I am fortunate that my treatment works quite well for me and that I come from an understanding and supportive family. I have the money to access the things I need. I feel a responsibility to be a voice for those who don’t have one, and if that means being open about what medications I’m taking, or how I’m managing my anxiety, so be it. Being vulnerable on the internet can feel intimidating sometimes, especially since I’m talking about something a lot of people don’t understand. But after hallucinating a ghost under my mattress, it takes a lot to scare me.
Photos by Louisiana Mei Gelpi.