Narcolepsy: Give Your Experience a Name

photo of woman driving car,

Narcolepsy: Give Your Experience a Name

By Julie Flygare, as told to Stephanie Watson

My sleepiness probably started in 2003, when I was an undergraduate at Brown University. I wrote it off as the byproduct of a busy academic and varsity sports schedule, but the muscle weakness that appeared a few years later wasn't as easy to dismiss.

By then, I was a law student at Boston College. When I laughed, my knees would buckle as if someone were poking them from behind. For a while, no one but me noticed that it was happening. But the buckling reached the point where I started to fall over. Then it began happening with other emotions like annoyance, surprise, and fear. It also became harder to hide.

I remember watching Saturday Night Live in the law school library with some friends. When I laughed, I fell forward and my chest hit the cubicle in front of me. My friend said, "That looks pretty bad." At home when my parents saw my knees give way and my head fall forward like whiplash, they were like, "Oh my God, Julie, that's weird."

Along with the muscle weakness, I had other unusual experiences at night. One night, I woke up to hear a burglar breaking into my room and saw a man reaching for my neck -- but I was completely frozen, unable to speak or get away. I was terrified, only to realize later there were no signs of any break-in. Similar unwelcomed visitors continued to wake me at night, only to vanish seconds later.

Searching for Answers

I finally had to stop making excuses for my symptoms. I had gotten to the point where, one day, I couldn't remember the 15-minute drive to school in the morning. I found myself in a parking lot with no idea how I got there. And this was after a full 10 hours of sleep the night before. I thought I might have some kind of sleep disorder.

I saw a few doctors during my first year of law school. When I explained to one that I was having trouble driving, she replied, "Well, I sometimes get tired when I drive, too." When I told her about my knees buckling when I laughed, she told me it was something I'd just have to get used to.

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Fortunately, I happened to visit a sports therapist about a running-related knee problem. She asked if my knees ever buckled. I told her that they did, strangely enough, when I laughed. She said she'd heard of that before. Then she wrote down a word: Cataplexy.

I went home and Googled the word. I saw it was a form of muscle weakness brought on by emotions like laughter. And that only affected people with narcolepsy. I learned my night visitors might also be symptoms of narcolepsy called hypnagogic hallucinations and sleep paralysis. A few minutes into my reading, I realized I had all the symptoms of type 1 narcolepsy with cataplexy.

Narcolepsy Is No Joke

I've spent the last 10 years speaking about narcolepsy at conferences. In that time, I think I've heard every joke. When I tell someone, "I'm going to speak at a conference about my experience with narcolepsy," more times than I can remember, the response has been, "Well, don't put them to sleep!" One woman at a conference burst out laughing when I told her what topic I was there to discuss.

Responses like these aren't meant to be hurtful. They come from a lack of knowledge. Before I was diagnosed, I wasn't knowledgeable either. I also thought it was a joke.

But the fact that narcolepsy is so stigmatized is no laughing matter. Research shows that young adults with narcolepsy feel similar levels of stigma as those with HIV. Inaccurate Hollywood depictions, like Carol in Deuce Bigalow: Male Gigolo, who falls asleep while bowling, or the narcoleptic Argentinian who passes out while climbing the stairs in Moulin Rouge, are powerful in shaping people's perceptions of the condition.

Narcolepsy is a neurological condition that's every bit as serious as multiple sclerosis, epilepsy, or Parkinson's disease. Yet our society perceives it as a joke. Or they make broad generalizations about it. Some people think you fall asleep here and there and it doesn't really impact your life, while others think you can't have any kind of job or life because you constantly fall asleep.

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Even my friends, who genuinely wanted to care about my situation, didn't quite get it. Once I was diagnosed, there was a feeling of, "Now you'll take medication and get better, right?" But it's not like you wave a wand, feel completely better, and go back to your normal life. Narcolepsy takes a lot of time and effort to manage, just like any other chronic condition.

Misperceptions and stigma have been big parts of the experience for me. The isolation and misunderstanding I've felt with narcolepsy have driven me into everything I've done for the last decade -- from my speaking engagements around the world, to my role as president and CEO of the Los Angeles-based nonprofit organization, Project Sleep, which I founded to raise awareness about sleep health and sleep disorders. It's been a big communication challenge to try to tackle, but changing misperceptions is the kind of challenge I love.

Setting the Record Straight

One of the main ways I tried to tackle the misunderstandings about narcolepsy was by writing my memoir, Wide Awake and Dreaming. Now I train other people to share their own stories through Project Sleep's Rising Voices of Narcolepsy program.

Facts and figures are great, but they don't hit people the same way stories do. I encourage people with narcolepsy to share their story, if it’s right for them. When people are willing to make that sacrifice and come out, it allows our community to push the needle forward so people don't continue to think this is a joke.

When you tell your story, I recommend illustrating it with specific examples, like the feeling of having your knees buckle or driving to school and not remembering how you got there. That helps people understand this condition isn’t just about falling asleep. Describing how your symptoms impact you can help others understand that sleepiness can be hard to detect and that cataplexy, hypnagogic hallucinations, and sleep paralysis exist.

You can also have loved ones come with you to medical appointments. It can help them to hear from someone other than the person with narcolepsy. Going to an appointment, reading a book, or attending a conference lets them educate themselves. Taking part in a Narcolepsy Network conference had a huge impact on my father. Hearing other people talk about narcolepsy made him realize how serious it can be.

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As a conversation starter, you might encourage your friends and family read a book or article about someone's experience living with narcolepsy. They can then use the story to ask questions like, "This is what I learned about narcolepsy. How does it resonate with your experience?" Reading my book helped my own friends and family understand what I was going through.

There are a lot of other ways for both people with narcolepsy and their loved ones to get involved -- for example, by making a donation to a fundraising event or sharing your story with your members of Congress. World Narcolepsy Day (Sept. 22) is a great opportunity for people to get engaged in many different ways, whether it's posting a message on social media or buying a T-shirt. My sister posted a photo of her cat and the sign for World Narcolepsy Day. It meant everything to me that she engaged in that way.

WebMD Feature Reviewed by Neha Pathak, MD on September 11, 2020

Sources

SOURCE:

Julie Flygare, founder, Project Sleep, Los Angeles.

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