Rylie Shaw would feel the relief first, the moment a competition ended, then her legs would give way, dropping her to the floor. For years, the exhaustion behind it was branded laziness, or depression. It was actually a rare brain disorder.

The Riverside County, California native, now 22, could sleep soundly through the night yet still struggle to stay awake come morning. She could reportedly drop off anywhere, at any moment, regardless of how rested she felt beforehand.

'At first, it was brushed off as typical teenage laziness. But I was exhausted all the time,' Shaw told a media outlet. She said her body never felt properly rested.

Doctors Missed the Signs

Doctors offered a string of different theories over the years. Some suspected an attention disorder.

Others suspected depression, according to the article. She also underwent blood tests to rule out diabetes, determined not to leave any explanation unchecked.

Narcolepsy is frequently misdiagnosed as a psychiatric condition, according to the National Institute of Neurological Disorders and Stroke (NINDS). It can take years for patients to receive an accurate diagnosis.

The answer came almost by chance. At 17, Shaw saw an ear, nose and throat specialist, suspecting breathing trouble was disturbing her rest, and he found a deviated septum and a collapsing nostril.

Before discussing surgery, the specialist recommended a sleep study. That overnight assessment finally provided the answers Shaw and her family had been searching for.

She was initially diagnosed with idiopathic hypersomnia, a rare neurological disorder causing extreme, unyielding daytime sleepiness regardless of how much rest a person gets. Her diagnosis was later changed to narcolepsy.

People with narcolepsy often enter REM sleep within 15 minutes of nodding off, the NINDS explains, far sooner than the usual 60 to 90 minutes. This disrupts normal, restorative sleep patterns.

Collapsing After Competitions

'I'd feel relieved that the event was over and sometimes suddenly collapse to the floor,' Shaw wrote of the episodes described above. Relief, more than any other emotion, was the trigger.

Over time, she developed cataplexy, a symptom involving sudden, conscious muscle weakness triggered by strong emotion. She eventually stepped back from competing, describing herself as an unreliable teammate.

Nobody around her knew when a sudden episode might strike next. According to the NINDS, narcolepsy is a lifelong condition with no cure.

Medicines and lifestyle changes can, however, help manage symptoms such as extreme sleepiness and cataplexy. Cataplexy can range from a brief drooping of the eyelids to a total body collapse, the agency notes.

Despite how alarming it looks, sufferers remain fully conscious throughout an episode. In 2023, Shaw began taking medication to regulate her sleep cycle.

She described the improvement as significant, giving her body the rest it had long been denied. Travel remains especially difficult, since disrupted sleep affects her far more severely than it does most people.

A short trip to Hawaii once left her needing roughly a week to recover. She now avoids adrenaline-inducing activities where possible and paces her commitments carefully.

'I have had to adjust my expectations and accept a slower pace of life, which can be difficult because I am naturally ambitious,' she said.

Life After the Label

Shaw, who has 1.5 million followers on TikTok and 61,000 on Facebook, uses social media to raise awareness of narcolepsy. She shares her daily experience of managing the disorder online.

The label that once followed her, she said, has been replaced by clarity. 'Receiving a diagnosis also gave me answers, and eventually it gave me purpose,' she wrote. Helping others, she added, keeps her feeling hopeful and positive about her condition.

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