Living with Narcolepsy: A Journey of Stigma and Struggle
For Matthew Horsnell, the struggles began in his sixth grade year. He would fall asleep at night, only to wake up feeling exhausted and struggle to get out of bed in the morning. As the years went by, Horsnell’s symptoms became more severe. He started experiencing cataplexy, a condition where strong emotions would cause him to lose control of his body and fall or slump to the ground.
Horsnell was diagnosed with type one narcolepsy with cataplexy, a condition that affects an estimated one in 2,000 people in the United States. However, it’s estimated that only 25% of those with narcolepsy receive a proper diagnosis, due to difficulties in obtaining an accurate diagnosis.
The struggle with narcolepsy goes beyond just excessive sleepiness. Many people with narcolepsy experience hallucinations, nightmares, and disconcerting visions while they’re falling asleep or struggling to stay awake. In Horsnell’s case, he experienced vivid nightmares and hallucinations that seemed all too real.
“I feel or I see whatever may be in my dream – like a deceased woman falling on top of my chest,” he said. “I can feel the weight of her body. I can feel her hair tickle my neck. I can see her right in front of my face. It’s quite a nasty experience.”
Despite his struggles, Horsnell has become an advocate for narcolepsy awareness, volunteering with various organizations and speaking publicly about his experience. He has also presented research on the condition, working with scientists like Jennifer Mundt, an assistant professor of sleep medicine, psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine.
Horsnell believes that his narcolepsy was triggered by a bacterial infection, such as strep throat, which destroyed the part of his brain that makes the neurotransmitter orexin. Scientists believe that the trigger for developing narcolepsy may be bacterial and viral infections.
There is no cure for narcolepsy, but medications can help manage some of the symptoms. Horsnell has tried a range of medications, from stimulants to strong sleep aids, and works with his doctors to manage his condition.
Today, Horsnell spends his time with his family, volunteering as a “sleep ambassador” for various narcolepsy associations and advocating for greater awareness and research into the condition. He hopes that his struggles will help others come to a quicker diagnosis and better understand living with narcolepsy.
“My journey has been one I take a lot of pride in, but it’s also been a very frustrating and challenging one,” he said. “If my struggles can help someone come to a quicker diagnosis or better understand living with narcolepsy, that would make some of those struggles fulfilling and worthwhile.”
