Everyone says they’re tired. Me? I fell asleep behind the wheel and knew something was really wrong

Living with narcolepsy is challenging, to say the least. It’s a neurological disorder that affects the brain’s ability to control its sleep and wake cycles, leading to symptoms such as excessive daytime sleepiness, disrupted nighttime sleep, sleep hallucinations, sleep paralysis, and even cataplexy. For Vancouver-based filmmaker Jenny Lee-Gilmore, living with narcolepsy has been a long and difficult journey.

From a young age, Jenny knew something wasn’t right. She struggled to stay awake in school, fell asleep in the car on the way home, and relied on coffee to get through the day. She felt like a zombie, constantly exhausted, no matter how much she slept. It wasn’t until she started falling asleep while driving that she realized she needed help.

After years of misdiagnoses and frustration, Jenny was finally diagnosed with Type 1 narcolepsy at the age of 21. The diagnosis brought a mix of emotions — relief, happiness, sadness, anger, and fear. She finally had an explanation for her symptoms but also realized the challenges that lay ahead.

Managing narcolepsy involves lifestyle changes and medication. Jenny takes a neurostimulant called modafinil daily, which has significantly improved her symptoms. However, lifestyle changes such as getting enough sleep, regular exercise, taking naps, and avoiding driving long distances or late at night can be challenging, especially in her line of work in the film industry.

Despite the challenges, Jenny remains determined to raise awareness about narcolepsy and break the stereotypes and stigma surrounding the condition. She participated in a research study in 2023 and even made a documentary about her experience, titled Little Miss Sleepy. By sharing her story, Jenny hopes to educate others about the reality of living with narcolepsy and encourage understanding and support for those affected by the condition.

Living with narcolepsy is no laughing matter. It’s an invisible disability that can have a significant impact on every aspect of a person’s life. By raising awareness and sharing her story, Jenny Lee-Gilmore is helping to shed light on the daily struggles faced by those living with narcolepsy and advocating for greater understanding and support for individuals with this often misunderstood condition.