I’m twenty-seven years old and have never had a “good night’s sleep.”
From childhood through early adulthood, I struggled to fall asleep at night and fought to stay awake during the day. At its most extreme, my body would demand twelve-hour sleep-wake cycles: refusing to wake up until 3 p.m. and finally caving in to sleep at 3 a.m. Whether it was blamed on technology, caffeine, or another culprit, family, friends, teachers, and medical providers were convinced that it was me choosing to be this way. Part of me believed it, too. TV shows and movies reinforced these stereotypes in my mind. Yet, part of me found flaws in their accusations. The spontaneous bursts of nocturnal energy started long before I ever took a sip of soda or owned a cell phone.
When I turned twenty-three, I started to notice a shift: I began to never feel completely awake. Other chronic illnesses had prevented me from fulfilling my longtime dream of volunteering overseas for the Peace Corps so I did the next best thing: work with international students at a university. My body can’t handle humid tropics or arid deserts but a rural college town would be smooth sailing (or so I thought).
On one of my first days, I attended an early morning meeting with staff from another department. We started off with introductions and I enthusiastically scribbled each person’s details in my notebook, eager to foster this new partnership. Then I felt it. Unbearable sleepiness crept down my body, weighing my head and eyelids down like tar. I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open. I figured that at least in the second case, I was somewhat upright and “attentive” (though probably appearing more like a propped-up zombie than a well-meaning professional).
This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s. I am fueled to surpass expectations by every click-baity gripe about millennials on my news feed, every microaggression I’ve swallowed behind a forced smile. Embarrassment, frustration, and desperation drove me to seek answers from various doctors and test quirky tips from online listicles. I had cut out caffeine due to the onset of an unrelated heart condition. I tried wearing orange-tinted glasses to block out wakefulness-promoting blue light from electronics (but mostly just made me feel like a rebel pilot from Star Wars). Nothing worked. I would be so tired that the times that I could manage to call or email in to my supervisor to request a sick day, my slurred speech and nonsensical text led them to jokingly say that I sounded drunk. Coincidentally, the onset of my chronic illnesses had led me to become intolerant of both caffeine and alcohol.
After multiple misdiagnoses, two overnight sleep studies, two afternoon nap studies, and twenty-three years of self-doubt, I was diagnosed with narcolepsy. It took an average of seven minutes for me to fall asleep during the nap series; in one nap, I fell asleep after just 12 seconds! I had also experienced early rapid eye movement (REM) sleep in two of the nap sessions: one after 5.5 minutes and another after just four. To put this into perspective, it typically takes ninety minutes for a person to reach REM sleep after sleep onset.
My narcolepsy diagnosis was a double-edged sword. It was validating because I finally had “proof,” albeit just a medical term, to validate my struggles with sleep to those that had doubted me. I could get a doctor’s note to request accommodations at work. Yet, I soon realized that a simple diagnosis wouldn’t magically make the world empathize with me or work with my new lifestyle. I remember being stuck on the word “narcolepsy” when my doctor first diagnosed me. The only times I had heard it before were in comedic situations. A teenager face-planting into their bowl of Captain Crunch before school. A person slumping down into their chair mid-conversation with a friend. It was more of an old wives’ tale than a potential reality. I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed. Narcolepsy is more complex than extreme bouts of sleep and people with narcolepsy are certainly more than running gags.
Sleep can be emotionally and physically draining for people like me. Some aspects of sleep can even be traumatizing. Recurrent, vivid nightmares throughout the night have left me feeling paranoid and jumpy well into hours after waking up for the day. Sleep paralysis is another symptom straight out of a horror film: I’m awake and blinking but I can’t move my body, speak, or breathe. Some folks see demons or hear scary voices when experiencing sleep paralysis. The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.
Looking back on my life, I realized how little sleep hygiene was encouraged outside of family and doctors reprimanding me for my personal issues. In elementary school, we had school-wide “fun run” fundraisers and jump-rope competitions. Messaging on milk cartons, cereal boxes, and snacks emphasized each respective product’s contribution to a “balanced diet.” National campaigns promote physical exercise and conscious eating habits to people of various ages and backgrounds. Why doesn’t sleep carry that same weight? Would I have had a quicker, smoother route to diagnosis, treatment, and accommodations with more community education and societal advocacy? Would I have been spared from years of feeling like a delusional, worthless burden?
I had struggled with depression and anxiety since adolescence. At first, I blamed my chronic illnesses for further aggravating my mental illnesses. I resented my nervous system for its inability to function properly, especially at the so-called prime of my life. I wasn’t one to say “no” to adventure. I wasn’t one to flake out on plans. I wasn’t one to show up late to work. I had become critical of myself for becoming the antithesis of the values I grew up with.
As I became more involved with disability rights, I realized that my embarrassment and frustration stemmed from the ableist structures and perspectives I encountered and internalized. Despite being regularly recognized for my initiative, efficiency, and innovation at work, I would be patronized for showing up thirty minutes late or sleeping at my desk during my lunch breaks. I hadn’t known about my rights to reasonable accommodations like flex time, restructured work hours, or nap breaks until I did my own research years later. Family would chastise me for spending family gatherings hidden away sleeping on a couch, rather than acknowledging how much effort it took for me to get ready, show up, and say my rounds of sincere “hellos” in the first place.
Friendships were the most painful gripes. Long-time friends grew uncomfortable with the new “fine print” that came with hanging out. If we went to a concert, I’d need reserved seating (no more mosh pits for me). If we went to a bar or coffee shop, I’d need to stick with water. If we planned a day of sightseeing, I’d need to schedule nap breaks in the afternoon. I’d still be excited to spend time together but these minor accommodations were deemed “boring” or “inconvenient.” If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist. If there’s one positive aspect of having chronic illnesses, it’s that they’ve allowed me to become better at filtering out fleeting friends, silly “rules,” and shallow activities to prioritize the people, values, and hobbies that are worth my limited waking hours and energy.
Since the onset of narcolepsy, I’ve devoted more time to self-discovery and pursuing what fits my new lifestyle. I used to love the thrill of the outdoors, especially travelling to national parks across the U.S. Of all of the travels I’ve had, it’s the natural scenic areas that are most cherished and ingrained in my memory: from the humbling, giant sequoias of Muir Woods to the tranquil, almost surreal lotus paddies of Cambodia. It’s challenging for me to leave my house outside of work obligations these days because of my chronic illnesses. However, I’ve found that I can bring the outdoors in by tending to houseplants. Many people admire plants for their visual appeal or alleged purifying qualities. I appreciate them for their diversity and tenacity. Contrary to popular belief, many plants can be rehabilitated and eventually flourish with the right care and environment. You’ll often see mushy succulents, ratty ferns, and droopy begonias all bunched together on the same rack in the garden section of a big box store. You’d be surprised how many of those sad, worn-out plants on the sale rack can actually be salvaged.
Like humans, plants are not one size fits all. Even within the same family, different plants can have different needs. If you picture someone taking care of a houseplant, the image that pops into most people’s mind is someone watering it and maybe placing it near a sunny window. Like diet and exercise for humans, there tends to be a limited focus on water and light. The appreciation and corresponding care for each plant’s unique light, water, soil, aeration, humidity, and feeding needs allows them to thrive. It may be different or a bit more work than what you’re used to but there’s nothing like spotting a tiny new growth on a plant that you put effort into. This observation helps me push through times where I feel like I’m being “dramatic,” “inconvenient,” or “selfish” due to my narcolepsy symptoms. I can thrive, as long as my basic needs (however unique they may be) are met and the environment I’m in is conducive to my growth. People with narcolepsy can achieve great things and we need our families, friends, schools, workplaces, and communities to recognize and support that potential. Wakefulness does not equal worth.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.