living with

My Life With a Sleep Disorder That Makes Me Nocturnal

Photo: H. Armstrong Roberts/Getty Images

I once interviewed author Michael Lewis on the challenges of being a night owl. “Morning people ignore the bigotry at the heart of our culture,” Lewis told me. “It’s like a conspiracy of farmers. I’m handicapped by what farmers used to do.”

I am, too. For as long as I can remember, my body has wanted to sleep during the day and stay up at night, the result of something called delayed sleep phase disorder. DPSD isn’t exactly a sickness — it’s a circadian rhythm oddity that makes my body clock tick at a weird pace. I fall asleep late and wake up late, kind of like being jetlagged forever. DSPD isn’t a psychological problem, like insomnia, or a choice, like staying up late to binge on Netflix. I sleep fine when I can set my own schedule — my fatigue is less a product of my own body and more of society’s expectations for when one ought to be awake.

Unusual circadian rhythms might not have been an issue for my far-back ancestors; in the past, people like me may have stood guard over my sleeping tribesmen, watching for lions or something. But then humans had to go and invent farming, meaning they had to wake up early to do all those agrarian early-morning chores. Fast forward a little bit in human history, and schools and workplaces have built their hours around those same early-morning wake-up calls. Today, waking up late doesn’t just throw you out of whack with everyone else’s schedules. It’s also seen as a referendum on your character: I’m lazy, I’m bored. Really, I just can’t fall asleep.

* * *

“How many hours do you sleep a night?” asked my pediatrician during an annual checkup toward the beginning of high school.

“Seven,” I lied. It was more like four or five, but people got mad when I said that.

“You should be getting more sleep at your age!” she snapped.

“I can’t fall asleep.”

“Don’t stay up late!”

“I’m not trying to. I just can’t sleep.”

Eventually, she let me go with instructions to try drinking some warm milk before bed. That night, I dutifully microwaved a mug, knowing as I did it that it wouldn’t work. None of the “sleep hygiene” tips ever did. But following them felt almost religious, like staring at illegible Hebrew at bar mitzvahs. As long as I did everything I was supposed to, I could feel less guilty about breaking society’s sacred schedule. Warm milk, meditation tapes, breathing exercises — these were my penances.

Recently, circadian rhythms have become more of a buzzword: Some scientists just won a Nobel Prize for studying them, and the Sleep Research Society changed its website banner from “Advancing Science, Education, and Health in Sleep” to “Advancing Sleep and Circadian Science” last year. But when I was a kid, nobody but sleep specialists and neuroscientists really knew about circadian rhythm disorders.

Before computers, I’d fill my sleepless nights with reading; before I could read, I would sit on my carpeted floor, drawing cartoon pterodactyls on printer paper. The alternative was lying in bed, watching the speckled blue paint on my walls morph ever so slowly into shapes, for hours at a time. In college, I read “The Yellow Wallpaper,” a short story where a woman diagnosed with hysteria is forced to lie in bed for months, staring at her yellow wallpaper. Eventually, she starts hallucinating creeping women in the paper.
I wanted to explain to the class that when you spend enough time staring at a wall, the universe stops looking solid. Its pieces move around like algae on a pond.

As the sky began to change from black to periwinkle each morning, I’d finally fall asleep. A few hours later, my alarm would go off. Since alarm clocks were often ineffective, my mom and I tried various different techniques to get me up. For a few days, I asked her to splash cold water on my face.
She’d open the door slowly, creep up to my bed, and stand above me with a plastic bowl of water for a few minutes, then tepidly drip a few drops on my face. She could never bring herself to really pour it. But it didn’t matter because by that point, I was already awake, my sixth sense screaming that someone was watching me while I slept.

* * *

I used to fantasize about teaming up with all the other night owls in Chicago to build our own town. We’d have schools, offices, movie theaters, and restaurants that all operated at night. Instead of nine-to-five jobs, we’d have five-to-ones (that’s p.m. to a.m.). I’d wake up comfortably every afternoon and leisurely fry up some eggs before strolling to school. The homeroom bell would ring just before sunset. Around midnight, we’d all head home for dinner. Insomniacs could come, too, provided they didn’t insist we try out their therapists or do breathing exercises.

But the dream never came to fruition, and I had to live with questions like “What’s wrong with your eyes? Are you sick?” People always pointed out my under-eye circles. As a kid, I’d meander through cosmetic racks at Walgreens, waiting for the day I’d have my own money to buy under-eye concealer. Once I started babysitting, I began collecting all the tan-colored goops trafficked by Maybelline and Neutrogena: double-duty under-eye wands, secret camouflage sticks, and ultra HD concealer crèmes, promising me all the delicate beauty of artillery. This was in the days before YouTube makeup tutorials, so I didn’t really understand how to apply any of it. I went through middle school with eyes surrounded by what looked like dry clay.

Whenever a classmate asked me how I was, I’d respond, “Tired.” Usually, they’d nod knowingly. Up to 16 percent of teenagers develop temporary DSPD. I had the lifelong kind so — not to brag — I was a pro. Though I wasn’t a particularly relaxed, live-and-let-live kind of kid, I did my best to cultivate a “chill” personality, which I figured was the only way to be chronically fatigued without being too much of a drag.

I’d generally stay awake through my classes, but toward the end of the school day, my limited supply of energy was almost completely exhausted. I’d sit in Spanish class, staring at conjugations and planning: When the bell rings, I’ll stand up. Then I’ll walk to my locker, through the parking lot, and go home. The plan always seemed iffy. The whiteboard was already disappearing into a colorful fog, and I could feel my eyelids shutting against my orders. I’ll get home, I assured myself. Right? Please?

Then the bell would ring and my Pavlovian response would kick in. Like watching a movie, I’d see myself stand up and walk away.

I thought about ditching early classes, but teachers made us watch “Scared Straight” videos where teens accused of truancy — literally, just not going to school — were told that they’d go to prison if they kept it up. It was my understanding that, if you missed enough school, you were automatically sent to juvenile detention. That alone didn’t scare me so much, but I’d also heard that you had to wake up at 5 a.m. at juvie, which I knew I couldn’t do.
I’d already given up clarinet for the same reason.

* * *

When I was 14, my mom took me to a sleep lab. I sat still as a giant orderly glued electrodes to my face. In school, I’d learned about the observer effect, a scientific axiom that says that measuring something changes it. It was supposed to explain electrons, but as I lay in the sleep lab bed that night, covered in uncomfortable glue and wires, I wondered if it might apply to sleep studies, too. Does covering someone in itchy wires to measure their brain activity change their brain activity? Then I wondered if all MRI studies were flawed. Perhaps all science was bullshit.

My mom and I returned a few days later to get my results.
The psychiatrist’s office was filled with framed certificates, and the psychiatrist reminded me of Freud — older, bearded, eyes that dug uncomfortably into mine.

“You have a circadian rhythm disorder,” he told me. I had no idea what that meant. He didn’t elaborate.

“Okay,” I said after an uncomfortably long silence. “How do I fix that?”

“You don’t,” he told me. “There’s no cure.”


“Lots of teenagers have it; you’re biologically designed to stay up later at your age. There’s nothing technically wrong with you. The problem is, you have to go to school.”


“I can give you drugs,” he suggested. “What do you want? Something to wake you up during the day, or help you sleep at night?” I thought about it. Staring at the walls all night was something I’d learned to live with. But being exhausted at school could affect my future. I chose the wake-up pills.

“By the way, I can tell that you’re depressed because you blink slowly,” he added. “I wrote a book on it.” He pulled a book away from its family of identical books on his shelf, which now resembled a smile with a missing tooth. The title was something about reading disorders on the face. I could tell he wanted me to ask for a copy, but that would feel like admitting I was depressed. Which, like plenty of people subsisting on a few hours of sleep a night, I was.

For the next week, I took one of his prescribed wake-up pills every morning. They did nothing.

Despite getting what turned out to be an accurate diagnosis, I still didn’t really understand what was wrong. My mom didn’t like the psychiatrist, so we never went back. I shrugged off the whole experience, assuming that “circadian rhythm disorder” was just a scientific way of saying that I had terrible luck.

* * *

In college, I took another shot at finding a cure, and went to a doctor who prescribed me Ambien. The pills didn’t make me sleepy, but they did make me sleep, sometimes — I’d take one and feel my brain begin to slowly shut down, functions turning off one by one until eventually I was unconscious. Other times, though, they didn’t do anything at all. I’d beg my boyfriend to join me on midnight walks around campus, where I’d see faces in bricks and cry for no reason. Once I dreamed that I’d made a weird digital painting involving swirling colors and eyeballs.
When I woke up the next day and opened my computer, I found it saved on Photoshop.

I ran out of pills after a couple months and made an appointment to get a refill.

“She gave you Ambien?” asked the nurse practitioner at my school’s health center.  “You should not be on that long term!” She wouldn’t give me any more. I was relieved to hear it. Ambien mornings were brutal; I’d wake up feeling like a donkey had kicked me in the forehead.

“So what should I do?” I asked.

“When people come in for sleep problems, we usually just refer them to mental health,” she explained.

So I booked an appointment, and a week later found myself in a tiny office, staring at my new therapist from my spot in her oddly hard armchair.

“What do you think about when you try to sleep?” she asked me.

“School. TV. Whatever I’m doing the next day.”

“Do you have a lot of anxious thoughts?”


“Huh. I don’t know what it is then.”


“Do you want to keep coming to therapy?”

“Not really.” I didn’t go back.

After college, I backpacked through Europe with some friends.
Jet lag was agony. I couldn’t sleep for my first 72 hours on the continent. By the third night, my brain began to fray. I heard sounds that weren’t there and saw people moving in the corners of my eyes that would disappear once I turned my head.

But jet lag on the way back to the U.S. was paradise. I got off the plane, and suddenly, I could fall asleep when it got dark and wake up when the sun rose. For the first time in my life, I was normal – for about a week, until my new schedule wore off.

* * *

Soon after my return, I moved to New York, into a tiny bedroom with no windows that my grandmother once described as “cavelike.”  No sunlight meant I was sleeping worse than usual. When I woke up in that bedroom each day, I’d stumble out of bed, dizzy and nauseous, and hold the wall to keep from falling over. It would take a few minutes to determine that I didn’t have the flu. At some point, I wrote a pilot script about a girl haunted by a ghost who wouldn’t let her sleep until she helped him out with some annoying ghost errand every night.

My job was a difficult haze, and my boss would notice my lack of energy and chalk it up to laziness, sometimes sending me page-long emails detailing everything that was wrong with me. I’d bring makeup to work so that I could clean up after crying in the bathroom, which got to be a daily ritual.
The clay goo around my eyes grew progressively more uneven as the day went on.

It got so bad that I took to WebMD. There, I discovered “delayed sleep phase disorder.” The description fit me so well that I felt like an idiot for not having discovered it before. It was slightly comforting to learn that I was a drop in a whole sea of idiots — doctors typically misdiagnose DSPD, so most people never learn they have it. I joined a Facebook community of other DSPD sufferers, many of whom couldn’t keep a job.

“Get your doctor to write a note for work,” one user told me. “The law says employers have to accommodate disabilities. So sometimes they do.”

I kept a sleep log and brought it to a sleep doctor, who confirmed that it sounded like I did indeed have DSPD, and that he could write me the note. I was saved.

But he didn’t write it that day. After I called his office half a dozen times over the next couple months, he finally mailed it to me. But my boss demanded a letter directly from his office, and I once again couldn’t get ahold of the doctor.

In the meantime, I tried melatonin, dark sunglasses, sleep therapy lamps, and chronotherapy, a torture designed to punish people like me by actually making us sleep less, then eventually collapse at whatever time society deems acceptable.

Some of the treatments temporarily tweaked my schedule, but nothing made a noticeable difference. Eventually, my job put me on “We don’t want to deal with officially firing you, but we will make your life suck until you quit” duties. So I quit.

* * *

Then, a miracle happened. My sublease ended and I moved into a new apartment. This time, I had a massive window facing east. My room was so small that I had no choice but to push my mattress against the window, meaning an enormous gush of sunlight gradually woke me up every morning. The sun must have reset my body clock, somehow, because not that long after moving in, my disorder disappeared.

Suddenly, I could sleep before midnight. I could wake up before my alarm. I could go through the day without feeling like a reanimated zombie. It was like accidentally inheriting a fortune from someone else’s family. I was petrified the universe would notice I was doing okay and take this new gift away from me.

After a few months, my lifetime of sleeplessness felt like a story I used to tell myself. I was on the other side of the looking glass. I effortlessly dropped 15 pounds.

“Ilana! Oh my god, you look great!” exclaimed my aunt at a family gathering. “What are you doing?”

“I’m getting more sleep.”

“It must be something else. Are you on a diet?”


“Then you’re exercising more.”

“No.” I tried to explain that the medical community widely recognizes that sleeplessness can cause weight gain, but she wouldn’t buy it. I finally told her that I might be walking more, which satisfied her.

A year later, I moved into a new apartment, making sure it had a bedroom window facing east. Unfortunately, a large balcony cast a shadow over my window. As I’d feared, my DSPD came back — and it seemed to have gotten worse. This time, I wasn’t just exhausted; I was nonfunctional.

I started getting lost in my own neighborhood. There was a busy intersection on my corner that I crossed every day. One morning, I came to it and squinted. Dappled light fell across the road, and my brain couldn’t distinguish between the light and the crosswalk. Was there even a crosswalk there? I couldn’t tell. I crossed this street every day; I should know this.
But for the life of me — literally, I suppose — I couldn’t remember.

Later that day, I crossed another busy intersection. When I was halfway to the other side, a driver slammed on the breaks a few feet away from me and honked. I was confused; the walk signal was on. But as I stared at it, I realized that the white man looked an awful lot like a red hand.

Incidents like this continued, and I began to avoid leaving my apartment unless I had someone with me. My new job let me work remotely, so I strongly considered moving to Europe to avoid getting run over. Thanks to the time difference, I’d be able to work from 2 p.m. to 10 p.m. there. But I’d miss my family.

As the seasons changed, light started entering my window from a different angle. It wasn’t as good as being cured, but I began to feel a little more normal again. I’ve come to accept that this is my normal — that sometimes I’ll feel like a fully functioning human, and sometimes I won’t.

My Life With a Sleep Disorder That Makes Me Nocturnal