A two-time world champion cheerleader from Riverside County, California, spent years fighting an overwhelming need to sleep during the day, even after a full night’s rest. A sleep study eventually revealed the cause: a chronic neurological disorder.
Rylie Shaw, now 22, said she and her parents spent much of her teenage years visiting doctors in search of an explanation for her inability to stay awake.
“At first, it was brushed off as typical teenage laziness. But I was exhausted all the time. I had to cancel plans, cut back on cheerleading and miss out on things I enjoyed because my body never felt rested. I could fall asleep anywhere,” she wrote in a Sept. 5 article for Newsweek.
Doctors offered several possible explanations. Some suggested an attention disorder, while others believed depression could be behind her persistent fatigue.
Shaw also underwent blood tests for diabetes, determined to rule out every possible cause. Still, none of the results explained the severe daytime sleepiness she was experiencing.
At 17, she visited an ear, nose and throat specialist after wondering whether breathing issues were disrupting her sleep.
“The doctor found that I had a deviated septum and a collapsing nostril, but before discussing surgery, he recommended a sleep study,” she wrote.
The sleep study finally delivered an answer. Shaw was diagnosed with idiopathic hypersomnia, a rare neurological disorder that causes severe, persistent daytime sleepiness no matter how much a person sleeps. Her condition later progressed to narcolepsy.
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As time went on, Shaw developed cataplexy, which causes sudden muscle weakness while a person remains conscious and is often triggered by strong emotions. For Shaw, the episodes were most commonly set off by feelings of relief.
“I was heavily involved in cheerleading at the time. After competitions, I’d feel relieved that the event was over and sometimes suddenly collapse to the floor. Eventually, I had to quit because I became an unreliable teammate. Nobody knew when I might suddenly fall asleep or experience an episode,” Shaw wrote in the article.
In 2023, she shifted to managing the disorder with medication that helped regulate her sleep and provided her body the rest it needed. “The difference has been significant,” the 22-year-old said.
Travel poses one of her greatest challenges, as sleep disruption impacts her far more severely than it does most people. Despite living in California, even a relatively short trip to Hawaii left her needing about a week to fully recover once she returned home.
“I have had to adjust my expectations and accept a slower pace of life, which can be difficult because I am naturally ambitious. I avoid activities that induce adrenaline, and I have to be careful about how much I take on,” the competitive cheerleader said.
Shaw, who has 1.5 million followers on TikTok and 61,000 followers on Facebook, uses social media to share her experience of living with narcolepsy.
“Some parts of life don’t come as easily to me as they do to other people. That’s something I’ve had to accept. But receiving a diagnosis also gave me answers, and eventually it gave me purpose. Helping others and bringing attention to this condition gives me a sense of meaning, and that’s what keeps me hopeful and positive,” Shaw added.