Narcolepsy study highlights patient challenges at work, in school

While people with narcolepsy often face challenges at school and at work, they can be successful with support, understanding, and appropriate accommodations, a study showed.

“The results underscore the importance of implementing … adaptive strategies and the need for a supportive environment” to allow people with narcolepsy to thrive in academic and work settings, the researchers wrote.

The study, “‘Twenty percent of my brain is dedicated to fighting sleep’: A qualitative narrative study on the educational and occupational costs of narcolepsy from the patients’ perspective,” was published in SSM – Qualitative Research in Health.

Narcolepsy is a disorder marked by abnormal sleepiness during the daytime. Other narcolepsy symptoms include cataplexy (sudden loss of muscle tone).

Studies on narcolepsy generally focus on the neurological and clinical impacts of the disease. But narcolepsy doesn’t just affect a person’s physical health: It also exacts an emotional, mental, and social toll on patients that can cause problems at school or in the workplace. Yet there hasn’t been much formal research into how narcolepsy affects day-to-day life at work or school for people living with the disease.

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Scientists in Slovakia interviewed 25 narcolepsy patients, saying they wanted to understand their perspective on the disease’s effects and “describe how patients perceive the impact of narcolepsy on their education and job participation.”

From their interviews, the researchers highlighted a few overarching themes. First, participants in the study reported that narcolepsy creates substantial challenges at school. Many reported struggling with sleepiness during class or trying to squeeze naps into their schedule.

“In high school, it became a problem,” one participant said. “I used every single break to take a nap. We used to go on these potato-picking field trips, and while the tractor was turning around, I could fall asleep and even dream. I’d sit on a bucket and doze off, and I’d already be dreaming. Then I started falling asleep in lessons. I sat in the front row, so they noticed.”

Participants who hadn’t been formally diagnosed with narcolepsy were met with misunderstanding and judgment from peers and teachers. Many reported being dismissed as lazy or bored. Participants generally said that they received more understanding after receiving a narcolepsy diagnosis.

“I had classmates who, I kind of understood them, even if they laughed about it, but they did get that it was some kind of diagnosis,” one participant said.

Although school could be tough, the researchers noted that it is possible for people with narcolepsy to be successful in academics, especially if they are given support and proper treatment. Study participants included people with medical and law degrees.

Narcolepsy also causes challenges at work, the interviews showed. One participant, whose work required “extreme concentration,” said that it’s “extremely frustrating” to be “distracted by the fact that you’re constantly managing your drowsiness.”

“Like 20% of my brain capacity is just dedicated to making sure I don’t fall asleep,” the person said. “Or at least trying to stay focused.”

Several study participants did not have traditional, 9-5 jobs. Some patients were self-employed or working remotely, allowing them to manage their own schedules. Others worked part-time or temporary jobs that didn’t require them to work for eight hours at a time. In many cases, patients relied on their families for financial support, and some reported that financial constraints had made it difficult to maintain a healthy lifestyle.

Experiences with coworkers were mixed. Some narcolepsy patients reported teasing and even harassment, such as being photographed after falling asleep at a desk. But others said they received support from coworkers after explaining their diagnosis.

“The supervisor asked me: ‘What’s wrong?’ I said, ‘I just need to rest for five minutes.’ He said, ‘Okay, but just five minutes, you’re at work.’ I told him about my illness. After that, he was very understanding and allowed me to sit down and rest a bit. He even informed others not to scold me if they saw me resting. I had a very good supervisor who tolerated it,” one participant recounted.

The researchers said the study highlights the importance of support in helping people with narcolepsy thrive at school and at work.