A Neuroscientist’s Life with Non-24

Introduction

Sighted Non-24-hour Sleep-Wake Disorder is a rare and often misunderstood condition, affecting only about 0.02% of the U.S. population. For many living with it, the challenges of aligning with a 24-hour world can feel isolating, especially when diagnosis and support are hard to come by. Today, I’m sharing the story of a research neuroscientist who has spent his life navigating Non-24.

For years, I’ve written about Non-24 as a disabling condition, one that disrupted my child’s life and left me searching for answers. So when I connected with a scientist who also lives with Non-24, I was struck by how different his journey was. His story shows what’s possible with acceptance, accommodations, and flexibility.

Early Years

His journey with Non-24 began in his teens, though he didn’t recognize it as such at the time. Growing up in 1980s/90s New York City, he was fortunate to attend schools where strict attendance policies weren’t enforced. "I managed by taking a day off to sleep through the day every 2 or 3 weeks," he recalls. His ability to schedule some classes later in the morning, without formal accommodations like an IEP, gave him the flexibility he needed.

Food has also been a flexible part of his routine. Growing up in NYC, late-night slices or morning bagels were within reach. He mentioned that he’s always been a picky and infrequent eater, and that his appetite aligns more with his circadian phase than social norms.

While he had flexibility growing up in NYC, he notes that 24/7 food access is not commonplace for others with Non-24, adding another layer of challenge to daily life. A person with Non-24 who lives on a free-running cycle may disrupt the sleep of co-habitants. Their need to use shared spaces (kitchen, bathroom, laundry) at unconventional hours can be too loud for those who follow a typical sleep-wake schedule.

Sports and Solidarity

One unexpected source of support came from youth sports. Hockey and soccer practices often started painfully early, some games required being awake at 3:30 or 4 am. The desire to play and support the team won out over the desire to sleep. As he puts it: “Being part of a regular group who was also experiencing grumpiness about having to be up when they would have preferred not to be was, I think, a potent reinforcement that I wasn’t the only person who had to be up at undesirable times of day.”

College Life

In college, his sleep patterns didn’t stand out among peers with similarly erratic schedules. He assumed he was just a "night owl," but his first real struggle came during a summer job at an internet startup. He had trouble keeping business hours, but the company’s flexibility allowed him to adapt. This early experience foreshadowed the career path he’d eventually choose: academia, where results matter more than rigid schedules.

Diagnosis

Growing up with academics, he knew about circadian rhythms long before the time he started his PhD, and felt confident he had Non-24. He shares that "Getting diagnosed was more about answering a question than a life-altering experience." There was resistance from his doctor who initially insisted he had Delayed Sleep Phase Disorder (DSPD). An actogram, recorded using an actigraphy device he purchased himself, confirmed Non-24. Even after showing the actogram, he explains: “There was a period of about 18 months where my doctor was very resistant to a Non-24 diagnosis and thought I had Delayed Sleep Phase Disorder and tried a number of different versions of melatonin, light, and melatonin + light therapies which were not effective." Thankfully the cost of actigraphy devices have dropped dramatically since his diagnosis, and consumer wearables like Fitbit make assessment more accessible.

His diagnosis led to a prescription for modafinil, which helps him stay alert when he must deviate from his free-running schedule. While modafinil helps him stay alert when needed, he emphasizes that diagnosis doesn’t guarantee that any treatments tried will create a ‘normal’ schedule. Using modafinil isn’t a silver bullet. His primary coping mechanisms are: a career with flexible hours, transparency with employers, and careful planning around his sleep cycles.

Privilege & Luck

He easily acknowledges the role of privilege in his story. "A lot of my experience dealing with Non-24 has been aided by a combination of privilege and luck that I don’t think is easily replicated," he says. His parents, both retired professors, supported his choices without viewing his sleep patterns as abnormal. "I suppose that if my parents tried to force me to attend school on days when I wasn’t in shape to do so, that would have been a lack of support and would probably have led to a worse life experience," he notes. His ability to negotiate flexible schedules in school and in work, is an option many sighted people with Non-24 don’t have.

Life in Academia

His decision to focus on research over professorial roles reflects the need for flexibility in managing Non-24. Academia has been a natural fit, not just because of his intellectual interests, but because it accommodates his Non-24 rhythm. His career allows him to focus on results rather than schedules, and he’s upfront with employers about his availability. "I can phase advance myself by several hours a day with sufficient sleep planning," he explains, though his natural rhythm advances about 48 minutes daily.

Advice for Others

a) Choose a career where hours can be flexible
b) Be up front with employers about the limitations on schedule and availability
c) Plan in advance around sleep times

Naomi Mittet, Board member for the Circadian Sleep Disorders Network (2023-2024). More information about Sighted Non-24:

Q&A page from Circadian Sleep Disorders Network: https://www.circadiansleepdisorders.org/docs/N24-QandA.php

Sighted Non-24: https://www.sightednon-24.org/