I’m your sleepiest friend. As a toddler, I would argue for more nap time. I’ve fallen asleep mid-conversation many times, and more than once, I’ve fallen asleep when out with friends.
I thought being sleepy was a normal part of life until my sophomore year of high school. I started to feel like maybe there was something more going on.
Let me set the scene for you: It was summertime in northern Michigan during the most highly anticipated week of the year — band camp! At band camp, more than 250 members of my school’s band program gathered for one week to master that year’s band camp show. We weren’t just friends, we were family.
I played the tenor saxophone in the marching band and so did many of my close friends. One afternoon during practice, we were asked to take a seat and entertain ourselves quietly by chatting, reviewing our charts, or just otherwise staying out of trouble.
While over 200 of my classmates continued to practice marching transitions, my friends and I decided to play a camp game. I was excitedly planning my response when the next thing I knew my name was being called over a megaphone in an effort to wake me up. I had fallen asleep in the middle of the game. I missed my turn, and nobody was able to wake me up!
So, why am I so sleepy? Well, I’m 26 years old, and I have more than one chronic condition. I know my doctors just about as well as I know my friends!
I’m a person living with narcolepsy with cataplexy, and a pan hypothalamic disorder that causes my brain to forget to tell me to breathe. As a result, I have sleep apnea and daytime apnea.
Narcolepsy causes significant daytime drowsiness and sleep attacks. People living with this disease may also experience unexpected and temporary loss of muscle control triggered by strong emotions, known as
Narcolepsy episodes can lead to accidents, injuries, or dangerous situations. There is no known cure for the condition. However, medication, lifestyle changes, and social support can lead to a better quality of life.
My degree of sleepiness was hard for my friends to understand. Being open and honest about my narcolepsy has made a huge difference. My friends know that if I fall asleep in the car while they’re talking, it’s not personal. It’s my brain’s way of regulating my sleep and wake cycles.
Having narcolepsy means that I never know when sleepiness will hit me like a tidal wave. I could be having the best time out with friends, and the next moment I’ll be asleep. It’s not my decision to make.
Narcolepsy and sleep disorders are commonly misrepresented for comedic effect in media, which severely limits the common understanding of these conditions. This wrongful portrayal has real life consequences including isolation, stigma, and even diagnosis delay.
If you want to learn more about narcolepsy while reducing stigma, try reading a book written by someone living with the condition, like Julie Flygare’s “Wide Awake and Dreaming.” Or, check out Project Sleep’s Story Sharing Series Rising Voices of Narcolepsy.
There are so many incredible organizations for people living with chronic conditions and disabilities. I’ve found a wonderful sleep community on Instagram. The more I got involved, the more incredible people I meet. And the best part? I don’t have to explain my narcolepsy or sleep disorders to any of these new friends. They understand from their own lived experiences. I’ve met some of my best friends by getting involved with organizations that further sleep disorder awareness and advocacy.
Sleepiness isn’t the same as laziness. I wish I could tell you that I knew that growing up. It’s a life changing realization.
There may be a lot of stigma associated with sleep disorders and narcolepsy, but you can help reduce that by consuming material made from first person experiences. Try to be open with your friends and family about your sleep disorder or narcolepsy.
My friends don’t always get it right, and that’s OK! They’re trying to understand. Sometimes that means I have to remind them that we experience sleep and wakefulness differently.
Cienna Ditri is a disability advocate, communications manager, influencer, and model. She creates fun, engaging, and educational social media content to raise awareness for chronic conditions and service dogs. Cienna is the Director of Communications for Fight Like A Warrior, a Board Member for Project Sleep, a Disability Influencer for Patti & Ricky, and the founder of Claiming Our Seat. Cienna has about 20 chronic conditions including hypokalemic periodic paralysis, mast cell activation syndrome, central hypoventilation syndrome, postural orthostatic tachycardia syndrome, narcolepsy with cataplexy, and others. Cienna shares her love of fashion to help the fashion industry become more inclusive. Cienna also works to make service dogs accessible for others like herself. In her spare time, Cienna loves to travel, surf, shop, cook, and play the saxophone. You can follow Cienna on Instagram, Facebook, and YouTube as “Chronically Persevering.”