I’m exhausted all the time – doctors called me lazy until they discovered my rare disease

She was tired of being tired all the time.

Alyssa Davis often found herself dozing off in school and dance class growing up, which she attributed to lack of sleep.

But the 26-year-old model and digital marketer knew something was wrong when she found it “impossible” to fight the urge to close her eyes out of sheer exhaustion.

The North Carolina resident sought medical advice, saying doctors sent her away for years telling her to “just drink coffee” — until she participated in a clinical sleep study and that he was diagnosed with idiopathic hypersomnia.

“It’s like being trapped in the movie ‘One Day Without End’ – except instead of reliving the same day, I’m just reliving the same exhaustion,” Davis told What’s The Jam.

Idiopathic hypersomnia is a rare chronic sleep disorder characterized by excessive sleepiness without a clear cause, affecting only up to 50 people in 1 million, according to the Sleep Foundation information site. Symptoms include dizziness or lightheadedness when standing, headaches, brief periods of sleep paralysis, and brain fog.

Davis says she sometimes has to schedule hours to complete simple tasks, adding that the condition clouds her thinking, making concentration a constant struggle.

“I have to get ready just to take a shower because (the exhaustion) never goes away,” she said. “I will sleep 10, 12, sometimes even 14 hours and I always wake up feeling like I had a sleepless night.”

Davis began showing symptoms when she was a child, noting that her mother remembers having to put her down for a nap more often than not.

She was always more tired than her friends and family, which affected her daily life and soon her self-confidence.

“Ever since I was little, I’ve been sleeping around and not hearing myself,” she shared. “It wasn’t just like having occasional parties. It was a constant, deep exhaustion that often blurred the edge of my vision.

“I would sit in drama class, looking forward to my favorite lesson and suddenly my memory would fade,” Davis continued. “The feeling of sudden exhaustion became the telltale sign that I was about to lose consciousness.”

Davis said her fatigue increased in high school and she would fall asleep in class, sometimes even having to leave for a nap.

“I regularly tripped sideways while tap dancing, collapsed to the floor, unable to stay standing, and countless times felt unsafe,” Davis recalls. “It was embarrassing and I didn’t know what the problem was.”

After seeing countless doctors who allegedly called her “lazy” and “careless,” she had enough and contacted a specialist.

The specialist suggested he participate in a sleep study, which required him to sleep for 14 hours straight.

The results showed that his body never entered a state of deep sleep necessary for good rest. In 2017, his condition was confirmed.

“I was practically bathing in coffee before I got an answer, and I felt like my struggles were being viewed as personal failures,” Davis sighed. “Learning what was wrong wasn’t just a lightbulb moment, it was more like a series of flickering lights guiding me forward through a dark tunnel.”

Even though she finally had an answer, she found it difficult to deal with her condition.

But then, in 2021, the first drug for idiopathic hypersomnia was approved by the Food and Drug Administration for adult use.

Davis is undergoing another sleep study so he can begin Xywav treatment. Today, she shares her story to raise awareness about the sleep disorder and encourage others to seek medical attention.

“It hasn’t been an easy journey and it still isn’t, but having a name for the fight that I’ve been trying to fight for so long has been a lifesaver,” Davis recounted.

“It gave me the language to explain my experiences, empowered me to advocate for my rights, and equipped me to fight for a better quality of life,” she added.