Advocacy is the remedy when narcolepsy symptoms are misread
It can be easy for others to mistake our symptoms for intoxication
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People often ask me what living with narcolepsy with cataplexy is like. I usually explain the sleep attacks, the cataplexy (sudden muscle weakness), the vivid dreams, and the constant exhaustion. But sometimes the best explanation isn’t found in medical terminology. Sometimes it’s found in the stories that make you laugh years later.
One of those stories happened aboard a cruise ship I was on with my husband, Kerry. Like many vacations, ours didn’t begin with relaxation. It started with a long drive, long security lines, heavy luggage, crowds, and having to board a ship with thousands of other excited passengers. Travel can be exhausting for anyone, but for someone with narcolepsy, it can feel like an endurance event. By the time we finally found our cabin and settled in, my body had already used up every ounce of energy it had.
I was functioning in what I jokingly call my “sleep-drunk” state. If you’ve never seen someone with narcolepsy after a physically and mentally exhausting day, it can be surprisingly easy to mistake us for being intoxicated. My eyelids become heavy. My speech slows. My reaction time lags. Walking feels like moving through wet cement, and simply keeping my eyes open becomes an incredible effort. To people who don’t know me, I can look like I’ve had one too many drinks. Ironically, on this particular day, I hadn’t had any.
In fact, I was walking toward the casino bar to order the opposite. I wanted a virgin piña colada. I don’t drink much, especially while traveling, because alcohol and narcolepsy aren’t a great combination. A frozen tropical drink without alcohol sounded like the perfect way to celebrate finally being on vacation.
Fruit juice denied
I walked up to the bar, smiled, and asked the bartender if I could have a virgin piña colada. She looked me up and down and finally shook her head. “I’m sorry, I think you’ve already had enough.”
Rachel Nesmith’s narcolepsy symptoms are often confused with signs of intoxication, leading to frustrating and sometimes comical situations like this one, in which she was denied a nonalcoholic beverage during a cruise with her husband, Kerry, also pictured. (Courtesy of Rachel Nesmith)
For a second, I thought I’d misunderstood. Enough what?
I was ordering coconut cream, pineapple juice, and ice. I tried explaining that I had narcolepsy and had spent the entire day traveling. Unfortunately, explaining narcolepsy while you’re visibly struggling to stay awake isn’t exactly convincing. The more exhausted I become, the more my symptoms can resemble intoxication. My speech becomes slower, my eyes struggle to stay open, and my movements lose their usual coordination.
In other words, I looked exactly like someone a responsible bartender would refuse to serve.
My husband quickly stepped in and explained that I wasn’t drunk, I have narcolepsy with cataplexy. Even then, the bartender remained unconvinced. She politely but firmly refused.
The importance of advocating for myself
That’s one of the challenges of living with an invisible neurological disorder. People can only interpret what they observe, and narcolepsy often disguises itself as something else entirely.
I’ve had people assume I’m lazy because I yawn. I’ve had strangers think I’m bored because my eyes won’t stay open. I’ve had moments when my slowed speech or heavy eyelids made people question whether I was paying attention or even sober.
Most people think narcolepsy is simply “falling asleep.” They don’t realize that severe sleepiness affects cognition, balance, speech, coordination, facial expressions, and reaction time. Sometimes our bodies appear impaired long before we actually fall asleep.
That cruise ship memory has become one of my favorite stories because it perfectly captures both the humor and the frustration of living with narcolepsy. It reminds me that education often starts with everyday experiences, not textbooks.
If sharing stories like this helps even one person recognize that not everyone who appears intoxicated has been drinking, perhaps that missed piña colada served a greater purpose after all.
Besides, I eventually found something even better than a virgin tropical drink: a real piña colada.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
Rachel Nesmith
Such an important discussion to have amongst ourselves! Have you ever had sleep drunkenness mistaken for actual drunkenness?