Julie Flygare had worked at a company for several years when an office move suddenly made it hard to accommodate her narcolepsy type 1. She could usually slip out to her car to take a quick catnap whenever she felt sleepy at her old office. But at her new location, she had to park her car more than a mile away.
"I specifically requested a nap space, a room where I could lock the door to get 20 minutes of rest," said Flygare, 41, president and CEO of the nonprofit Project Sleep in Los Angeles.
But the first time she tried to access the room, it was locked, and she couldn't get in. The second time, the couch she'd asked for to lie down on had been moved.
"My supervisor was so upset that she insisted on dragging a bench into my nap room herself," Flygare recalls. "I was glad she had my back, but it bothered me that the human resources department didn't seem to take my narcolepsy seriously."
Narcolepsy can cause excessive daytime sleepiness that makes it hard to work. Thankfully, if you present medical evidence, like a doctor's statement, you can usually get accommodations at work.
"Employers sometimes get confused when you tell them you have narcolepsy type 1," says Jacqueline Geer, MD, a sleep specialist at the Yale School of Medicine in New Haven, Connecticut. "Their image of it may be grossly misrepresented because of what they've seen in the movies and in other media."
TV shows often joke about narcolepsy, showing a person falling asleep to avoid chores or an uncomfortable conversation. This view of narcolepsy can add to confusion about the condition.
Some people may not know they have it or misunderstand the symptoms. And asking for help can be difficult.
Most employers have to make reasonable accommodations for your narcolepsy type 1 under the Americans with Disabilities Act (ADA). By itself, your diagnosis doesn't automatically qualify you. You'll need to show your employer that your narcolepsy "affects your sleeping, which in turn makes it hard for you to do your job properly," says Flygare.
Qualifying for Disability
When you tell your manager that you have narcolepsy type 1, they may ask for documentation from a doctor.
You'll ask your doctor to write a letter to:
- Confirm your diagnosis of narcolepsy type 1.
- Include details on cataplexy, if you have these episodes.
- Provide a list of symptoms for your narcolepsy type 1.
- Explain how your narcolepsy affects you.
- Discuss how your condition causes daytime sleepiness.
- Record your cataplexy triggers – such as strong emotions like fear or sadness.
- Suggest accommodations.
You'll also submit your own letter. This letter will describe your narcolepsy type 1 symptoms and what that looks like for you. Specify how it impacts your job function.
Include information on how fatigue can make it hard for you to focus. Also outline the specific accommodations you need to succeed.
It's important to speak up, even if you don't necessarily feel that you need all of the available accommodations.
"You want to make sure [the accommodations] are set up and put into place, so that you can rely on them if it suddenly becomes necessary," says Flygare.
Accommodations for Work-Related Tasks
No two people with narcolepsy type 1 are the same, says Flygare. Different people may need different types of help. But here are some of the most common ones:
Nap breaks. "When people with narcolepsy type 1 get sleepy, they'll see a sharp drop in productivity: They'll re-read the same line over and over without comprehension, or fall asleep at their desk," says Geer.
A space to nap. You'll want a quiet, dark space to rest. You might ask for access to:
- Your own "nap room" to nap
- The new mothers' nursing room, which may already have a sofa and locked door
- A quiet room with couches
- A first-aid room
- Your workplace's clinic or nurse's office, if available
Flexible schedule. Flygare's days are often packed with video meetings, as she's the CEO of Project Sleep. She tries to schedule as many as possible in the morning, when she's most awake and alert.
"I try to prioritize, because the morning is when I can get the most work done," she explains.
You may also want to request specific work shifts, depending on your symptoms, says Flygare.
If you tend to be most alert in the morning, request an earlier morning shift. But if you have trouble waking up in the morning, try an afternoon shift.
The ability to work from home. It's a good idea to work from a home office once or twice a week. This can help if you've had a night of bad sleep or your brain feels very foggy, says Geer. You may want to request a company laptop that you can use, too.
Modified work environment. With narcolepsy type 1, your cataplexy symptoms may flare up at work. That's because the workspace has bright lights and lots of noise, says Geer.
You may want to request a quiet, less stimulating space to work. It can help you focus and get your work done faster.
A Plan of Action for School
Narcolepsy usually develops during your teen years, and early symptoms can be mistaken as laziness.
When you're younger and have narcolepsy, you may:
- Be late for school or class
- Fall asleep in class
- Appear disorganized and forgetful
- Find it hard to stay awake at particular times of day, such as the morning or afternoon
Teens with narcolepsy are protected under the Individuals with Disabilities Education Act (IDEA).
From elementary through high school, you're eligible for either a 504 Plan or an Individualized Education Program (IEP). Both require public schools to create accommodations for your disabilities, including narcolepsy type 1. If you're in college, it's called a plan of action.
Talk to your school counselor about setting up a meeting to put your accommodations in place to help you succeed.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Julie Flygare, 41, president and CEO, Project Sleep, Los Angeles; narcolepsy type 1 advocate.
Jacqueline Geer, MD, sleep specialist, Yale School of Medicine, New Haven, Connecticut.
Project Sleep: "How to Ask for Sleep Disorder Accommodations at Work," "Narcolepsy at Work Toolkit."
Narcolepsy Network: "School Accommodations for Students with Narcolepsy."
Job Accommodation Network: "Sleep Disorder."
