Narcolepsy, the neurological disorder that’s not just people being ‘lazy’

Rebecca Renner is very sensitive to the word lazy.

The 27-year-old writer based in Florida says for someone with narcolepsy, the word can be both negative and hurtful.

Narcolepsy is a neurological disorder that can affect a person’s sleeping habits and, sometimes, muscle control. People with the disorder often feel excessively sleepy, hallucinate or suffer from paralysis.

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Sharing her story

Renner recently wrote about her own experiences with narcolepsy or “N” for Glamour magazine and how she wasn’t diagnosed with the disorder until last year.

“I was diagnosed … after 10 years of exhaustion and stress-induced paralysis. Fearing I couldn’t afford the necessary tests and unsure about what was even going on, I opted to just tough it out through my teens and early twenties,” she wrote.

Renner says she first started seeing symptoms in high school and even found herself quitting her job as a high school English teacher because of the stress. In Glamour, she notes she spends a lot of energy making sure she doesn’t look sick.

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“I dress well, stand up straight, and never leave my apartment without a full face of makeup. I’m a pro with concealer on dark circles. But the truth is, waking up in the morning is excruciating.”

Renner adds part of her journey has also been dealing with doctors who couldn’t seem to diagnose her and friends who just didn’t get why she felt sleepy or overly stressed at times.

“Usually it’s the patient’s fault and they are doing something wrong,” she says, adding that doctors have told her everything from how she should eat better, sleep more or take care of herself.

“People who have been diagnosed learn to advocate for themselves,” she says, adding there are a ton of support groups on social media for people in the same boat.

The impact

Dr. Brian Murray, a neurologist and sleep expert at Sunnybrook Health Sciences Centre in Toronto, says narcolepsy is relatively common (about 1 in 2,000 people have the disorder in Canada) and is often under-diagnosed or missed altogether.

“It’s very scary when it happens,” he tells Global News. “It’s not recognized and it has a significant impact on quality of life.”

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Murray says because people with the disorder are often so sleepy, there are barriers to go further in education or even their careers. It can affect a person’s ability to drive a car or in Renner’s case, even date.

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“We have a good sense of what the cause is and we have a lot of treatments,” he says. People often try strategic napping at certain times of the day so they can get through things like work or school, he adds. Medication is also beneficial for improving alertness and anyone who has muscle tone loss.

Murray adds part of the reason why it’s so under-diagnosed is that it’s often hard for health-care professionals to diagnose narcolepsy without ruling out other conditions. “Sometimes people may just be sleepy or have sleep apnea, but after you address those, it could be narcolepsy or cataplexy.”

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The social stigma

And while Murray says there is more awareness around the condition in general, a lot more can be done.

Renner says a big component of narcolepsy is tackling the social stigma.

She adds over time, she has been able to get over the stigma of being tired, sleepy and lazy.

“I am very ambitious and I do a lot, but I could do a lot more if I wasn’t sick,” she tells Global News.

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Murray says health professionals, as well as friends and family of those with narcolepsy, need to continue to take them seriously.

“It’s unfortunate because this means people don’t get the right diagnosis or treatments … it’s very important they get help.”