Rylie Shaw is speaking out after years of medical dismissal led to a life-changing diagnosis.
Shaw, 22, of Riverside County, California, spent her teenage years shuttling between doctors as crushing fatigue derailed her days, her cheerleading career, and her social life. The two-time world champion cheerleader could sleep through the night and still struggle to keep her eyes open, yet physicians repeatedly told her nothing was physically wrong.
“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.
Different specialists offered different guesses. Some suggested an attention disorder, others pointed to depression. Shaw even underwent blood work to test for diabetes, determined to leave no possibility unexplored. Nothing explained her symptoms.
At 17, she visited an ear, nose and throat specialist, suspecting breathing problems were disrupting her rest. “The doctor found that I had a deviated septum and a collapsing nostril, but before discussing surgery, he recommended a sleep study,” she wrote in the article.
That study finally delivered answers: idiopathic hypersomnia, a rare neurological disorder causing extreme, unrelenting daytime sleepiness regardless of sleep duration. The condition later progressed to narcolepsy.
The physical toll deepened as cataplexy set in. The sudden, conscious muscle weakness triggered by intense emotions struck most often when Shaw felt 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,” she wrote.
She left the sport she had excelled in, her body unpredictable, her presence a potential liability to the teams she had once anchored.
In 2023, Shaw began managing the disorder with medication that helped regulate her sleep and finally gave her body genuine rest. “The difference has been significant,” she said.
Travel remains a particular vulnerability. Sleep disruption hits Shaw far harder than most people, and even a trip from California to Hawaii required roughly a week of recovery after her return.
“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,” she said.
Shaw has built a substantial online presence around her experience, with 1.5 million TikTok followers and 61,000 Facebook followers. She uses those platforms to document daily life with narcolepsy and reach others facing similar struggles.
“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,” she added in the outlet piece.
The years of misdiagnosis took a heavy toll before that clarity arrived. Shaw’s parents accompanied her to appointment after appointment as the family searched for someone who would look past her age and see a genuine medical condition. The “teen laziness” label stuck until the sleep study proved otherwise.
Shaw continues sharing updates with her followers across TikTok and Facebook as she navigates life with the disorder.