I spent far too long thinking I was the problem...
At first, I thought I wasn't sleeping enough. When that wasn't the answer, I knew I must've been sleeping too much. Then, I figured I wasn't exercising enough, wasn't drinking enough water, was anemic or B-12 deficient. The symptoms had been building for years, but it wasn't until I started to avoid driving at night for fear of nodding off behind the wheel that I decided it was time to go to the doctor.
That's how I ended up fidgety and alone in the parking lot of a medical park at 8pm on a Friday. I was waiting for a man I'd never met to arrive and unlock the front door of a darkened office building, shepherd me into the elevator, and then spend the night watching me sleep through a one-way window, occasionally waking me to reapply a dislodged electrode.
After a full 24 hours of testing, I only had about a week to wait for the results. I was expecting them to confirm my assumption that my mild childhood asthma had developed into sleep apnea. In addition to my fear of driving long distances or at night, an embarrassing slew of snoring incidents provided ample motivation for scheduling my sleep study. (In my mind, even a CPAP machine would be less shameful than my disruptive caterwauling.)
"You have narcolepsy." My doctor is a man of few words, an admirable quality in a medical professional. "You hit REM sleep in an average of five-and-a-half minutes," he said. Then, as if fearful that I wasn't acutely aware of the REM statistics of typical sleepers, he added, "That's abnormal."
The past several years began to make much more sense. I'd always assumed I was an incredibly lame twenty-something. I could never muster up the energy to go out with friends or to stay up in the library cramming for a final. I missed a lot of events I really wanted to attend because I was simply too tired to go.
I followed in the grand tradition of ailing women in assuming the symptoms I was experiencing were products of my own action, or lack thereof, instead of a condition that might require medical intervention.
My life changed almost immediately after I started receiving care. I could focus in class, eat dinner without nodding off at the table, and drive without drooping eyelids. (When I asked my doctor about my horrific snoring, he shrugged. "Some people just snore.") It took a year or two to determine the right combination of care to manage my condition and now, on good days, my life feels nearly untouched by my narcolepsy.
That also happens to be a complicating factor when I ideate myself as a chronically ill person.
There are many people with "invisible" conditions like mine. I'm quite lucky that my narcolepsy is well-managed type 2—narcolepsy without cataplexy. My condition doesn't warrant a handicap placard on my car (an igniting event for people that make it their business to intervene in the lives of strangers) or a card with instructions prepared for good samaritans in case I have a cataplectic episode in public. Still, my condition does have a tangible impact on my daily life.
Sleep hygiene is crucial for narcoleptics (as it should be for everyone, really). I have an ideal bedtime and an established pre-bed routine. Deviating from this routine won't kill me, certainly, but it does make my life harder. I struggle to stay awake and maintain sustained focus and it may become too dangerous for me to drive. This impacts things like my performance at work, how active I can be, how many responsibilities I can get done on time, and even the food I eat. Tired cooking does not make for high-quality, nutritionally balanced meals.
All of these considerations make the typical structure of socialization more difficult for me. I have to weigh the benefit of disrupting my sleep schedule to spend time with my loved ones after work against the repercussions I'll face during the day. It's not a life-threatening trade to make, but that doesn't make it a decision undeserving of consideration.
Unfortunately, the person that is often most in need of this reminder is me.
I often describe myself as a "diagnosed morning person."
It's a quick, sound byte-y way to turn down a late night invitation or explain why I prefer a 9am meeting to a 4:30pm one. But it also represents the larger struggle I've had since receiving my diagnosis: how to tell people without making it a joke?
When I was in high school, I remember greeting my friends by pointing out a rather unsightly pimple on my chin. My exact words escape me, but it was something along the lines of: "This thing has its own gravitational pull, it's so f*cking big." The idea was if I could beat everyone to the punchline, I could escape feeling embarrassed. You can't be the butt of the joke if you make it yourself!
For far too long, I've done the same thing with narcolepsy. I categorized it as an absurd condition to have and assumed that people I encountered shared that attitude. That's why I'd roll my eyes or laugh when sharing my diagnosis, or turn it into an identity zinger about being sleepy. And sometimes, being a narcoleptic does indeed contribute to a funny moment. Who else could fall asleep on a shuddering, screeching rickshaw ride through the packed streets of Vietnam on New Year's Eve? But the condition itself is no joke.
It doesn't help that popular media depictions of narcolepsy often treat the condition jokingly, too. In one episode of The Simpsons, Homer is diagnosed with narcolepsy and it becomes a running gag about how he's too tired to do any of his chores. This reinforces the longstanding stigma in Western society that conflates exhaustion with laziness.
A 2024 narcolepsy study published in Sleep Medicine reports that "almost all participants described experiencing anticipated stigma and internalized or 'self-' stigma" because of this long-held belief, which can contribute to (among other things) the absurdly long delay to diagnosis for narcoleptics. Turns out, I am not the only narcoleptic to put off seeing a doctor about my symptoms for years.
The pervasive commoditization of wellness on social media also contributes a sense of absurdity around sleep hygiene. Trends like the "morning shed" have turned going to sleep into a product-laden process most often undertaken by young women in their pursuit of various beauty goals. Now even the word "routine" often evokes this hyper-commercial process of aesthetic grooming, which makes it easier for people without narcolepsy to dismiss our nighttime routines as "just another TikTok-fueled trend," which doesn't reflect the reality of our condition.
Generally, my interactions with people when describing my narcolepsy are positive. There have been a few instances when the person I'm talking to rejects any difference between being sleepy and being chronically tired, which minimizes the condition and classifies narcoleptics as weaker 'normal' people instead of people with a chronic condition.
Even more rarely, a pissing match will crop up whenever my description of my condition offends someone who feels that my experience dismisses or devalues the exhaustion they feel. "You won't know what it means to be 'tired' unless you're a parent," is a common refrain. (Sharing that pregnant and breastfeeding postnatal women with narcolepsy cannot take their meds, which actually makes them far sleepier than their typical narcoleptic state not to mention the state of their non-narcoleptic peers, shockingly does not disarm this way of thinking.)
Confronting the various realities of contemporary society that make exhaustion a semi-permanent way of life for far too many of us is an important, and separate, conversation. To experience the typical level of exhaustion that narcoleptics do, "the average person would need to stay awake for 48–72 hours." Navigating pervasive exhaustion of that level requires attention, accommodation, and respect—period.
I am fortunate to experience ample accommodations in my daily life that support my ability to thrive. Working from home allows me to manage symptoms when they arise by letting me do things like change locations easily, stand or sit on the floor when that's better for me, and eat and drink and take naps when I need to.
My loved ones, too, understand that I'm not being dramatic when I tell them I need to sleep. There are various triggers that can make narcolepsy worse, and a big one of mine is fluorescent lighting. A few weeks ago, I was Christmas shopping at the mall—notorious culprit for triggering lighting—when I needed my dad to help me walk to a booth at the food court so I could crash. There we were: Dad nonchalantly eating his pizza slice as he waited for his slumped, face-down daughter to wake up and stop drooling on the table. I can only imagine the looks we received.
My condition is well managed because I have the time, support, and space to be attentive to my symptoms and respond appropriately when needed. That's why I've decided to make one of my resolutions for 2025 about becoming an appropriate advocate for myself and for narcolepsy in general. My chronic condition is not a joke and I refuse to make it into one anymore.
As for the few people who still dismiss narcoleptics as lazy bums, even when they're talking to us? I'm certainly not going to lose any sleep over them.
Top Picture Credit: Maker&Son
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