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When Naomi Mittet gave birth to her first and only child, her sleep went topsy-turvy. The West Seattle resident didn’t think much of it at first—after all, infants aren’t exactly known for their reliability in blissfully snoozing through the night—but as her baby turned into a toddler and still was sleeping at all different times, she started to wonder what might be going on. She’d worked in early childhood education and always been able to get little ones to nap. Why wasn’t it working with her own offspring?
School days were rough. Mittet’s child might go to school on only a few hours of sleep or have to stay home and rest. Their mental health was suffering, and school administrators didn’t understand. “They just thought I was either not trying hard enough or that maybe my kid was lazy, or they thought it was related to anxiety,” she says. “I would actually call it traumatic. It became a life-or-death situation for my kid and it was terrifying not knowing what was going on.”
Mittet, now 56, threw herself into research, and when her child was 12, she finally cracked the code: non-24-hour sleep-wake phase disorder.
Non-24, as it’s known, is a circadian rhythm sleep disorder, part of a family of conditions where someone’s sleep-wake cycle is disrupted. These disruptions are caused by the body’s internal clock not being synced to the sun or social time. Many people have experienced this feeling temporarily when traveling across time zones, but some people have something akin to jet lag all the time.
It’s related to our chronotype, which is about 50 percent determined by our biology. “All of us are born genetically with a predisposition to a very specific chronotype, meaning the time of the day when we prefer to be asleep and when we’re most cognitively alert,” says Seattle-based neuropsychiatrist Lina Fine, MD. In general, there are early birds, intermediates, and night owls. Anyone who’s on the far end of the spectrum one way or another—or doesn’t align with the spectrum at all—could be at risk for a circadian rhythm sleep disorder.
While these disorders are thought to be fairly rare, they’re also widely considered to be underdiagnosed, so it’s tough to put an accurate number on it. Current estimates say 3 percent of people worldwide are affected.
A circadian rhythm disorder differs from a sleep disorder like insomnia or restless legs syndrome in that the quality or quantity of sleep is not typically affected when a person is able to sleep according to their preferred schedule—it’s all about the timing of that sleep.
Non-24 is the rarest circadian rhythm sleep disorder, and like the name implies, it happens when someone’s internal clock is not running on a typical 24-hourish cycle. While most of us have an internal clock that’s not exactly 24 hours—the average is actually about 24 hours and 11 minutes—people with non-24 might have a 25- or 26-hour clock. This means they get sleepy and wake up at a different time every day, often about an hour later than the day before. (While some people with non-24 have clocks shorter than 24 hours, this is not as common.) An estimated 50 percent of people who are completely blind have non-24, but it also happens in sighted people.
That’s the case for Mittet’s child, who was diagnosed after two weeks of wearing an actigraphy device, which monitors sleep-wake cycles. Although it’s not an easy condition to treat, the diagnosis made a huge difference. Mittet started homeschooling so that her child could free-run, or follow their own natural rhythm. This means that they go all the way around the clock, which takes approximately a month—so if they go to bed at midnight tonight, bedtime might be somewhere around noon in two weeks. Being allowed to free-run quickly improved their health, erasing symptoms of sleep apnea and asthma that had previously been present.
Doing things like scheduling appointments in advance or working a job with set hours is challenging for those with non-24. “It’s very debilitating,” Mittet says. “There’s a lot of isolation, and for the caregivers, there’s a lot of stress and guilt. I do not know how my kid did it. They said most of their energy at school throughout the years was on just trying to keep themselves awake. And that just breaks my heart, because I had no idea.”
Even in a milder form, circadian rhythm disorders can be disruptive. Loyal Heights resident Tyler Zuck, 40, considers himself a night owl—he likes stargazing more than high noon—but he also enjoys a sunrise. When he was in college, he tried to transform himself into a morning person by taking a swim class at 7am and a math class at 8am. He’d always heard the advice that if he just stuck to the habit long enough, he’d develop the discipline to get up early with ease. That did not happen. “I got so depressed, I just about flunked the semester and didn’t go back the next year,” he says.
Although Zuck was pretty good at functioning on very little rest—a trait he thinks he inherited from his dad, an ER doctor—as he got older, it became more difficult. He started to realize that something wasn’t right with his sleep and it was seriously affecting his mental health. He was diagnosed with sleep apnea, but that made no difference. By chance, he stumbled on some information about delayed sleep-wake phase disorder, the most common of the circadian rhythm disorders. This is when someone tends to fall asleep and wake up later than conventional hours.
“I went, ‘Oh my goodness,’” he remembers. “It was that moment in your life when you realize a whole bunch of stuff is connected.”
Zuck found a sleep specialist in the area who had circadian rhythm disorders listed on his website. After Zuck wore a diode ring on his head for six nights to read his brainwaves, the doctor was able to determine that he was not getting REM sleep until very late in his sleep cycle, if at all.
For people with non-24, it can feel like you’re constantly traveling across time zones.
Zuck’s doctor encouraged him to try waking up at 2pm to see how it felt. He was skeptical, but he tried it out—and was blown away by the results. “I didn’t know you were supposed to wake up like that, not wanting to be in bed,” he says. “The shocking feeling to me was ‘I don’t want to be in bed anymore; I’m done here.’ I’d never experienced that before.”
Today, Zuck is a full-time stay-at-home parent, and while his responsibilities mean he can’t wake up at his body’s preferred time of 2pm, he’s generally able to sleep until 10am all but one or two days a week. He uses light therapy glasses to help shift his clock and has found a sustainable routine. But the thing about circadian rhythms is they like to shift back to baseline. “My doctor warned me that it would be like pulling on a rubber band—the further I got from my natural spot, the harder it would be to pull on it, and if I ever stopped light therapy, I would snap back,” he says. That has been accurate—three or four days without the glasses or with a disrupted schedule sends him right back to his starting point.
Living with delayed-sleep-wake-phase disorder is challenging, but it hasn’t been all bad. “When my kids were infants, it was a superpower,” he says. “I basically could stay up late and there was always an awake parent with the baby.”
Dr. Fine says treating circadian rhythm disorders isn’t easy, but it’s often doable. “It is something that can be gently manipulated, slowly over the course of time, if an individual is able to stick to gradual schedule adjustments,” she says. Harnessing light and darkness to your advantage is one of the most effective strategies, and some people have success with melatonin supplementation. But it’s still hard work, especially given that people tend to gravitate toward their natural sleep patterns.
The early nights and overcast days of Seattle winters don’t typically make much of a difference either. “People think in Seattle, we don’t get any light, but even the overcast, low light between the rains is still pretty good,” says Dr. Fine. (This is in reference to getting sunlight at the right times to help sync your clock. The sun is still way more powerful than indoor lighting, even on a very gray day. With something like non-24, though, you’re not going to be able to change your schedule with sunlight, although it might help you feel a little better.)
If you’re having an issue sleeping, how do you know if it merits further investigation? “On some level, you have to trust yourself because subjective perception can be more important than objective trackers,” Dr. Fine says. If you’re fatigued during the day despite getting seven or eight hours of sleep at night, that could be a sign that your sleep isn’t restorative. Excessive broken or fragmented sleep and trouble falling asleep can also signal trouble.
“It starts as a circadian phenomenon, but it ends as a psychological one because, for lots of people, it becomes sleep-related anxiety,” Dr. Fine says. Even many sleep doctors aren’t well versed in circadian issues, so it helps to find one who is. The nonprofit Circadian Sleep Disorders Network, which Mittet has served on the board of, maintains a database of specialists who patients have reported are knowledgeable in this area.
Each person has to find what works for them. While some might want to try to sync to sun time as closely as possible, others may want support in structuring their life to accommodate their circadian rhythms. Often it’s a combination of both.
“If somebody gets diagnosed, maybe they’re not going to find a treatment for it, but they can at least have support and understanding,” says Mittet, who herself identifies as a delayed sleeper. “More compassion and even just belief that the condition exists would just make such a huge difference for people who have circadian rhythm sleep disorders.”