Sleep conditions are not well understood in this country, and yet they make a major impact on people’s lives every day. Thank you to the state of New Hampshire for proclaiming that March 9, 2019 — Suddenly Sleepy Saturday — be recognized as Narcolepsy Awareness Day. In honor of this recognition, I want to build a greater understanding of narcolepsy and how it can impact people.
Narcolepsy often goes undiagnosed for years. More awareness will improve the chance of diagnosis for the approximately 1 in every 2,000 individuals in the U.S. who are living with narcolepsy (Narcolepsy Network). I am among the one in 2,000 people who had a long road to diagnosis, learning I have narcolepsy after over 20 years of experiencing symptoms.
Tiredness had always played a role in my life. Fatigue, moments of automatic behavior, and the struggle against not being able to focus were so ingrained in my everyday life from such a young age, that I never considered that I might have a sleep disorder.
As a child, I would be scolded for falling asleep during class presentations or when we would watch films. In college, I would take notes throughout a whole class and yet walk out of the room and not remember taking the notes at all (automatic behavior). As an adult, I would get frustrated with myself when I felt like I wasn’t performing to my full potential, and this developed over time into anxiety.
In spring 2018 during a routine visit with my doctor, she started asking questions from the Epworth Sleepiness Scale after I had mentioned my fatigue. In the past, medical professionals had always brushed aside my complaints of fatigue saying that I was just “doing too much” or that I was “just depressed” and should look inward at what was going on in my life. The questionnaire proved to tip off to my doctor on this particular visit that I could perhaps have a sleep disorder based on my high score on the scale. Despite the nerves that this induced, I looked forward to taking the next step in finding answers.
Last July, I underwent a full 24-hour sleep study that concluded that I did in fact have narcolepsy. This is a sleep disorder that involves irregular sleep patterns and disruptions of the wake/sleep cycle. According to Narcolepsy Network, “While the cause of narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system.”
Due to a lack of understanding about this condition, it is often underrecognized and underdiagnosed. There is also a broad spectrum of symptoms that can be experienced by people living with narcolepsy. For myself, it often includes sleepiness, the inability to fall asleep despite being exhausted, automatic behaviors and vivid dreams to the point where I can sometimes confuse them as reality. Other people can experience night terrors, sleep paralysis and an associated condition referred to as narcolepsy with cataplexy.
In the almost eight months since my diagnosis, I’ve been able to find peace in understanding the way that my disrupted sleep has impacted my life. I’m more forgiving to myself on difficult days, and I’m able to plan my days according to energy levels. Treatment has included medication to help stave off the daily dip in energy, which has helped me regain the feeling of more control over my day. It has also included therapy to treat the underlying anxiety I have carried with me for years, which is common in people living with narcolepsy.
If you have difficulty with sleep, I encourage you to advocate for yourself to find answers. Do your research, and ask your doctors. I’ve been thankful to find resources and a whole community of people online to lean on to go through the process of learning how to live my best life with narcolepsy. For more info on this condition, check out Narcolepsy Network or Project Sleep, and the books ”Sleepyhead” by Henry Nicholls, and ”Wide Awake and Dreaming” by Julie Flygare.
Wishing everyone the restful sleep they deserve for Narcolepsy Awareness Day, on Saturday, March 9.