Narcolepsy in the Workplace: Considerations for Employers and Employees



Narcolepsy, a chronic neurological disorder that affects the brain’s ability to control wake-sleep cycles, can affect all aspects of a person’s life, including work life. As described by Narcolepsy UK, “Whether someone’s narcolepsy affects their work depends on the nature and severity of their symptoms, and how well controlled those symptoms are… [It] also depends on the nature of the work and any risks that could arise as a result of, for instance, excessive sleepiness or cataplexy.”

Of the estimated 135,000 to 200,000 Americans affected by narcolepsy, according to the National Institute of Neurological Disorders (NINDS), while all have daytime sleepiness, only 10-25% will experience all of the other symptoms. These include cataplexy (the loss of sudden muscle tone) sleep paralysis, and hallucinations. Given the variability between symptoms from one person living with narcolepsy to another, there is no “one size fits all” approach when it comes to workplace accommodations and individuals’ needs.

Still, those with narcolepsy may be able to receive support. Narcolepsy is a condition that is covered by the 1990 Americans with Disabilities Act (ADA), which requires employers to provide accommodations for qualified persons and prohibits discrimination against qualified individuals who can perform essential functions of the job, with or without accommodations. Whether one qualifies for disability will depend on the severity of symptoms and the work limitations that may result from those symptoms.

Challenges of Narcolepsy in the Workplace

Due to its effect on wake-sleep cycles, narcolepsy can lead to unusual sleep patterns, excessive daytime sleepiness, sleep attacks, and cataplexy, each of which can make it difficult to focus or to perform at work. One or all of these symptoms could make job performance difficult.

Women—who also disproportionately serve in the role of caregiver—may face additional challenges trying to achieve work-life balance, which could have implications for both their physical and mental health.

Considerations for Employees

Deciding whether to disclose a narcolepsy diagnosis to an employer can be a difficult one, due to stigma, prejudice, or stereotypes, but as shared within a narcolepsy resource from Harvard Medical School notes, “It’s often best to discuss narcolepsy at work before problems arise” so that the individual’s narcolepsy is not misinterpreted as disinterest or poor motivation.

Individuals who decide to share information about their narcolepsy with their employer should be prepared to discuss what narcolepsy is and what accommodations could help improve their performance at work. Some suggestions from sleep-disorders.net include:

  • Short nap breaks (e.g., 15 minutes every 3-4 hours)
  • Permission to stand during meetings
  • Moving your desk next to a window to receive natural light
  • Flexible arrival time, or moving to a morning or afternoon shift
  • Working from home
  • Keeping a consistent, rather than a rotating, shift

Read Matthew Horsnell’s and Tatiana Corbitt’s experiences approaching their employers about their narcolepsy diagnoses on sleep-disorders.net.

Considerations for Employers

During an interdisciplinary narcolepsy roundtable convened by the Society for Women’s Health Research (SWHR) in March 2022, Working Group members discussed the great need for workplace accommodations, including employers offering flexible work schedules, private nap areas (similar to a mother’s/lactation room), and accommodations for potential absenteeism for employees with narcolepsy.

For employers, it is critical to remember that each case of narcolepsy is different. Therefore, understanding your employee’s narcolepsy and how it may impact their work is important for managing expectations and ensuring everyone is set up for success. View additional considerations from the Job Accommodation Network and from Narcolepsy UK.

For more information about narcolepsy, view the following:

 

SWHR’s Narcolepsy Program is supported by educational sponsorships from Avadel Pharmaceuticals and Harmony Biosciences. SWHR maintains editorial control and independence over educational content.

Narcolepsy, a chronic neurological disorder that affects the brain’s ability to control wake-sleep cycles, can affect all aspects of a person’s life, including work life. As described by Narcolepsy UK, “Whether someone’s narcolepsy affects their work depends on the nature and severity of their symptoms, and how well controlled those symptoms are… [It] also depends on the nature of the work and any risks that could arise as a result of, for instance, excessive sleepiness or cataplexy.”

Of the estimated 135,000 to 200,000 Americans affected by narcolepsy, according to the National Institute of Neurological Disorders (NINDS), while all have daytime sleepiness, only 10-25% will experience all of the other symptoms. These include cataplexy (the loss of sudden muscle tone) sleep paralysis, and hallucinations. Given the variability between symptoms from one person living with narcolepsy to another, there is no “one size fits all” approach when it comes to workplace accommodations and individuals’ needs.

Still, those with narcolepsy may be able to receive support. Narcolepsy is a condition that is covered by the 1990 Americans with Disabilities Act (ADA), which requires employers to provide accommodations for qualified persons and prohibits discrimination against qualified individuals who can perform essential functions of the job, with or without accommodations. Whether one qualifies for disability will depend on the severity of symptoms and the work limitations that may result from those symptoms.

Challenges of Narcolepsy in the Workplace

Due to its effect on wake-sleep cycles, narcolepsy can lead to unusual sleep patterns, excessive daytime sleepiness, sleep attacks, and cataplexy, each of which can make it difficult to focus or to perform at work. One or all of these symptoms could make job performance difficult.

Women—who also disproportionately serve in the role of caregiver—may face additional challenges trying to achieve work-life balance, which could have implications for both their physical and mental health.

Considerations for Employees

Deciding whether to disclose a narcolepsy diagnosis to an employer can be a difficult one, due to stigma, prejudice, or stereotypes, but as shared within a narcolepsy resource from Harvard Medical School notes, “It’s often best to discuss narcolepsy at work before problems arise” so that the individual’s narcolepsy is not misinterpreted as disinterest or poor motivation.

Individuals who decide to share information about their narcolepsy with their employer should be prepared to discuss what narcolepsy is and what accommodations could help improve their performance at work. Some suggestions from sleep-disorders.net include:

  • Short nap breaks (e.g., 15 minutes every 3-4 hours)
  • Permission to stand during meetings
  • Moving your desk next to a window to receive natural light
  • Flexible arrival time, or moving to a morning or afternoon shift
  • Working from home
  • Keeping a consistent, rather than a rotating, shift

Read Matthew Horsnell’s and Tatiana Corbitt’s experiences approaching their employers about their narcolepsy diagnoses on sleep-disorders.net.

Considerations for Employers

During an interdisciplinary narcolepsy roundtable convened by the Society for Women’s Health Research (SWHR) in March 2022, Working Group members discussed the great need for workplace accommodations, including employers offering flexible work schedules, private nap areas (similar to a mother’s/lactation room), and accommodations for potential absenteeism for employees with narcolepsy.

For employers, it is critical to remember that each case of narcolepsy is different. Therefore, understanding your employee’s narcolepsy and how it may impact their work is important for managing expectations and ensuring everyone is set up for success. View additional considerations from the Job Accommodation Network and from Narcolepsy UK.

For more information about narcolepsy, view the following:

 

SWHR’s Narcolepsy Program is supported by educational sponsorships from Avadel Pharmaceuticals and Harmony Biosciences. SWHR maintains editorial control and independence over educational content.