What I Wish People Knew About Narcolepsy

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.

It’s more like overwhelmingly bad jet lag. Like you can’t possibly stay awake, no matter how hard you try.

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.

I have to work really hard to maintain a level of health that most people take for granted.

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].

It’s taken a lot of time and effort for me to finally accept that not only do I need rest — I deserve it.

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.

Photography: Louisiana Mei Gelpi
Creation Direction: Emily Zirimis

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  • Abby

    In the search for what ailed me, narcolepsy was considered. I had most of the daytime sleepiness symptoms and that’s one of the biggest things that people think — that you’re Mr Bean in Rat Race falling asleep immediately.
    The medicine I took really was not bad as far as medicines go, and it helped a lot. Then it was discovered my issue was Addison’s disease and the treatments obviously were much more helpful. Bravo to this woman for sharing her experience. It’s tough to have a disorder usually known for its supposed comedic effect

  • Thank you for this story and its depiction of real life courage – it takes none to boldly comment on what we know nothing about and a lot to live with such comments, own fears and desires.

  • Alice

    I loved this article so much.

    I know a bit about narcolepsy because it was suspected I had it (did the sleeping tests and everything) and while I don’t have it my anxiety and depression have some overlapping symptoms. Wondering if my tiredness is real or not happens almost daily. I knew people who were obsessed with lucid dreaming but for me it’s just another way I feel trapped inside my own brain.

    Sleep issues are difficult because people assume we’re either lazy or not sleeping enough.

  • Tess

    Anyone read The Mysterious Benedict Society? It features a narcoleptic protagonist, although the disorder is more of a whimsical character trait than anything else.

  • Modupe Oloruntoba

    Thank you for sharing! Never stop believing that it’s doing good, I knew almost nothing about your condition and reading about your experience has been eye opening.

    • Suzan

      Yes, I feel similarly! Great and interesting article, Eleanor!

      And sorry for this off-topic remark, but I can’t help myself: Modupe Oloruntoba, what a beautiful name you have!

      • Modupe Oloruntoba

        Haha, why thank you!

  • Stephanie

    This is so cathartic to read. I have a different sleep disorder that basically is all the symptoms of narcolepsy but technically it isn’t because I don’t enter dream sleep right away when I fall asleep during the day. But the treatment/prognosis is all the same–I’ll never not have to take a stimulant to stay awake at work, and while I did okay in school I wonder what grades I could have gotten in college if my brain didn’t flip some sleep override switch every time I tried to sit down and study for more than 10 minutes.

    I always thought it was my fault–like I just wasn’t trying hard enough to be a morning person, or was just too lazy to want to stay awake, etc.–but then a friend pointed out to me that, no, it’s not ‘normal’ to need to take a nap in the office bathroom, or fall asleep in the stands of a sporting event, because your brain literally needs to hit that reset button. I think it took me so long to get a sleep study done because “everyone’s tired!” and “we all work too much!” and I assumed I was just depressed.

    I didn’t get diagnosed until I was 30 and honestly I’m still unpacking it, and surprised at the extent of my feelings about it. Part of it is realizing that I spent decades dealing with this when I didn’t have to, and dealing with it alone because I didn’t know it was more than laziness or ‘I just love naps!’ The validation I’ve found from reading other people’s stories online has been incredibly helpful.

  • caleymcd

    Very good article. Explains narcolepsy type one in great words…. i have exactly the same symtoms since the age 13 and only recently been treated at 27. Caley xx

  • Teri Giese

    Such a difficult and ongoing battle for those dealing with narcolepsy.I have a “non specific sleep disorder”.?!Had the overnight study done many years ago.With all the electrodes,etc.Said also Chronic Fatigue Syndrome?!Anyway,Am now post menopausal and 56.Apparently,when I was able to go to sleep by 1 a.m.;I had no REM until after 10 a.m.!That was when I was on Ambien.I relocated to another state,and had to go off all my meds.Has been a difficult 4 years.Was diagnosed with ADHD,as well ,25 years ago.The issue,I have,now;after all this is…Am up every night until at least 3 a.m.Then sleep until at least 11 a.m.Evey evening around 7 p.m.,I am VERY tired.So,maybe 2xper week I must nap.Am taking all natural herbal remedies for focus during the day,and melatonin with herbs fir sleep.Wish I could go to bed earlier and not waste so much if the daylight sleeping!Docs are NOT interested in starting me on my old meds,which I agree with;but have not offered any other solutions.So,I can relate to some of what you deal with.No appointments,before 3p.m.,and up till 4-5a.m.every night.Yikes!Hope the herbal and adaptogenic remedies work soon!😳!The sleep pattern is now blamed as a post menopause gift!So,I am just rolling with it for now.But,the non specific diagnosis is the frustration.As is a lifestyle not always convenient.😔

  • Hazel

    I loved this article. I have a different chronic medical issue that has also completely changed my day to day life, and I really identified with this: “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 don’t want to scare intimate relationships away by explaining how it might make me dependent or just a straight up drag, but I also want those who I love to understand my situation and appreciate what I do to be a functional adult! My life may be different from what I envisioned as a child, and sometimes it just seems to unfair (especially when it’s an invisible disability like your own), but it’s forced me to realize that most people don’t live without major bumps in the road, and that we all have our issues that we can fixate on and allow to control our lives. Good luck to all those out there coping with a life changing medical issue! It’s never picture perfect, but it’s still your life, and therefore just as deserving of all the happiness and adventure as any other <3

  • Stunastoat Sam

    Thank you for this.
    As a fellow younger narcoleptic and cataplectic it was an amazing surprise to see this on here.

    I may come back and comment more specifically after I’ve taken my morning stimulant!

  • Ciccollina

    Gosh, I never really thought about narcolepsy as something people actually have, I always saw the cute videos of narcoleptic goats or kittens on YouTube and thought it was kind of an adorable thing to have but that is obviously so so dumb. Thank you so much for enlightening me and for sharing your story x

  • Kathleen

    You described many of my feelings and experience with Narcolepsy/ Cataplexy. Thank you for educating others and sharing your experience. It is important for us all to know we are not alone and to find comfort in the support and knowledge we can share with each other.

  • DaREalBOy

    Great story, personally as a 14 year old narcoleptic person I found that very inspiring and reassuring.
    I too wish people could see just how difficult it is to manage the sleeping. at some points it felt like I was reading an article about myself with all these narcolepsy symptoms. I hope to one day be able to manage my own narcolepsy properly.