At 16, I couldn’t decide whether I wanted to be an actress or a politician. So, I acted in school plays, stage managed at a local theater, and volunteered for political campaigns. We celebrated at the cast party after our final production of Death Trap junior year. Nothing crazy - soda, Never Have I Ever, pictures on disposable cameras, and home by my 10:30 curfew. The next morning my dad took me flying in a Cessna 172. I was excited to accompany. But this wasn’t a joy ride. It was a crappy morning; he wanted to practice take-offs and landings in a crosswind. As soon as we got in the air, I was overcome by sleepiness. My eyes became so unbearably heavy as exhaustion flooded my bloodstream. My body became so weighted that I had no choice but to close my eyes and sleep. As my dad turned base to final, he woke me up in case we crashed and needed to bail out of the plane. We touched down smoothly, and as we went back up to make the loop again, I closed my eyes and quickly drifted off. We repeated this cycle for the rest of the flight. My dad laughed, he was flattered by my confidence in him, and we both just assumed I was tired from the night before.
But these events kept happening, feeling otherwise engaged and then consumed by a crushing need for sleep. When I addressed it with my doctor, I heard the mantra that would ring in my ears for the next twenty years, “you are busy, and busy people are tired.” As the years progressed, being tired became my personality. Whether it was college honors classes or becoming an advance staffer for President Obama, I surrounded myself with high achievers who were also busy. They wore being tired as a badge of honor. It was proof of their dedication. So I wore it as proof of mine.
As I got deeper into my 20s, I started questioning my abilities. I felt broken. I could see my colleagues outpacing me on the race track. We were working the same hours, and they said they were also tired, but somehow they could keep running. Somehow my tired affected me more than my peers; they could dig for something deeper, perhaps they wanted it more than I did. Whatever it was, I felt like I was failing.
I started to think of life as a series of sprints. Push, push, push, and then rest. My tired ebbed and flowed. When it was really bad, I talked to my doctor. But dismissing it as stress, my schedule, or hormones was easy. They told me to make sure I was getting eight hours of sleep in a dark room and never use my laptop in bed. My gut told me it was more than that, but I had no idea where to investigate further and either got too wrapped up in work or started to feel better and dropped it. During these years, I also suffered from extremely vivid night terrors and frequently woke up in the middle of the night without being able to go back to sleep, which my doctors also attributed to stress. Eventually, I was diagnosed with anxiety.
The anxiety medication didn’t stop the sleepiness; by the time I turned 35, there was no reprieve. I was now working in entertainment. I slept eight hours a night but still took regular naps in the office restroom. I cried more during the day than I didn’t. My doctor sent me for a sleep apnea study. It came back negative and she told me I was fine. I melted down on the floor of her office. Big, hysterical, breathing into a bag, ugly tears. I wasn’t fine! How could anyone see or hear me and think I was fine? I wasn’t leaving until I had answers. She stopped me, told me we were both beyond our education on sleep disorders, and recommended I see a sleep specialist. I felt a mix of anger and relief. On the one hand, there could be answers for me, but after years of shouting from the rooftops that I was tired, there was another place I could have been searching and had no idea.
Three months later, I was diagnosed with narcolepsy, a neurological disorder of the sleep-wake cycle. The diagnosis came as a bit of a shock. Narcolepsy was a joke I had seen on TV; I had never fallen asleep into a bowl of soup. But as I read the symptoms, it wasn’t the caricature from the movies - it was my life. Excessive daytime sleepiness, fractured sleep, and even what I thought were night terrors were hypnagogic hallucinations. It wasn’t that I couldn’t cut it; my tired was actually different.
Years into a diagnosis, I experience the world differently now. Medication helps me function in a world I was drowning in for decades. This isn’t to say every day is perfect, but on the bad days, I have answers. I am no longer suffocating in the loneliness and fear that comes from knowing something is wrong and yet still being told you are fine.
One in two thousand people have narcolepsy, and one in five Americans is affected by a sleep disorder, yet the majority remain undiagnosed and without access to treatment and support. So many diagnosis stories sound like mine. General practitioners have less than two hours of sleep education and don’t know about the 80 sleep disorders that exist or how to diagnose them. And as patients, most of us have no idea that fatigue can come from something other than a bad mattress or work stress and are left without the language to advocate for ourselves.
If your tired also feels different, know there is help. Just because you're not falling asleep in soup doesn't mean you aren't experiencing a sleep disorder. If you feel like something is off and your tired is different, see a sleep specialist, and know your concerns are valid.
If you are looking to learn more about sleep disorders, check out Project Sleep. Project Sleep is a non-profit organization dedicated to raising awareness about sleep health. Sleep specialists are covered on most major insurance plans, but may require a referral from your general practitioner. Employers can do more to help bridge the diagnosis gap by having open conversations about sleep health and encourage their employees to seek help for easily treated sleep disorders like sleep apnea. For those employees already diagnosed with sleep disorders it’s important for employers to accommodate flexible hours and provide designated private spaces for employees to nap.
