When you hear the word “narcolepsy,” you may think of Rowan Atkinson’s character in the movie Rat Race. He has narcolepsy, a disease characterized by frequent bouts of day-time sleepiness. Throughout the movie, he tends to fall asleep at the worst times, always in the thick of the action.
While it may seem humorous to see Rowan Atkinson stop mid-stride and begin snoring loudly in the middle of a crowded airport, it does not accurately depict how challenging living with narcolepsy can be.
Narcolepsy is not what you think.
For people who suffer from this chronic disease, there is much more involved than falling asleep into one’s bowl of soup, or stopping mid-sentence during a conversation. While these things may seem funny, it’s not at all for those living with it. Symptoms vary, but many people with the diagnosis report irritability, aggressive behavior, fidgeting, lack of attention, sudden staring (micro sleep), memory boggle, heavy limbs…. the list goes on.
The word you may not be familiar with is “cataplexy.” Cataplexy is an involuntary and abrupt loss of muscle and limb functionality, typically caused by extreme emotions like happiness, excitement, pleasure, or anger. It could happen anywhere, at any time. School. Work. Dance class. Playing badminton. The grocery store. While filming a YouTube video.
Julie Flygare woke up one night to an unknown man in her bedroom. He approached her bed with hands outstretched and then proceeded to choke her. She couldn’t move, let alone scream. And then, just like that, he was gone.
Not long after, while laughing with her friends, she collapsed to the ground with weakened knees. Being so unpredictable, these sudden attacks began to destroy her life. She thought she was going crazy.
Wouldn’t you?
And then, a sports specialist put two and two together. Julie would leave her office with a diagnosis of narcolepsy with cataplexy.
Today, Julie has made it her mission to spread awareness about narcolepsy. “For me, it’s this violent call to sleep… like I haven’t slept in 24 to 48 hours,” she describes. “It’s so embarrassing.” She has founded Project Sleep, published a book about living with the disease (Wide Awake and Dreaming: A Memoir of Narcolepsy), and has spoken to many medical professionals about the condition.
There is no cure for narcolepsy, but people like Julie have found ways to manage it.
On day, I hope instead of laughing at someone with narcolepsy, everyone learns to extend a helping hand.
Found out more about Julie here, or read about Project Sleep and Julie’s experiences on Patientworthy.
Additional resource:
Narcolepsy: Not Alone, an international awareness campaign
