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People With Narcolepsy, Sharing Stories Towards Greater Empathy
Written by Kevin MortonThere are over 150,000 people with narcolepsy in the United States alone. That's a lot. But it still doesn't feel like many people know what it's like for those who are affected by the condition.
In an effort to help empathy spread, this page is dedicated to people with narcolepsy who would like to share how it has affected their life, or what it is like to live a day in their shoes. The challenges, the triumphs, the frustrations, and the strategies. Below is a list of stories that have already been shared.
If you have narcolepsy, or someone close to you does, please share your story with us as well. Every perspective counts.
To get things started, here are excerpts from an interview with one of our fellow students, Julia, where she talks about her experience growing up with narcolepsy:
When I was a sophomore in high school I started noticing I was falling asleep all the time. I was falling asleep in essentially every class until about October when I fell asleep at the wheel and my mom decided that the symptom was severe enough to take me in to the pediatrician.
.....I normally don't tell people that I don't know very well. Sometimes I tell my teachers and at first they think it's hard to believe but when I explain the science of it they at least know I know something about it. It's much better now that I'm being treated for it. Since I'm on Nuvigil people don't necessarily know if they're just strangers; I can hide the symptoms and pass it off as not having enough sleep the night before.
.....At home a lot of my friends made fun of me and I really didn't like that. Not in the sense that they were being mean, but just because they thought it was hilarious that I would fall asleep randomly. And it is funny but it's also very real for me especially in situations where every fiber of my being wants to stay awake and I can't. It's really not a funny situation. I also think the more serious symptoms people tend to overlook. It really does impact my academic life and it really does endanger me when I'm driving. So it frustrates me when people treat it as a joke rather than something that's real and medical and that needs to be taken seriously.
.....I think that people should recognize that it's very different from moments when they are really, really sleepy. I personally think it's very different from being very sleepy in a moment as opposed to literally wanting with every fiber in your being to stay awake and not being able to. I don't think very many people have honestly had that experience. I also think it's important to recognize that it's an actual condition that people are sensitive about and that it affects people's lives and that it's not a joke in the sense that you watch YouTube videos of narcoleptic puppies and laugh at them. It's not really the same because it actually does impact people's lives. It's important.
Do You, Or Someone Close To You, Have Narcolepsy?
Narcolepsy is an extraordinary sleep disorder from a scientific perspective, but it is even more extraordinarily disrupting to those who are affected by it.
Share your narcolepsy-related story with the world below--your insight is sure to aid others who can relate to what you have experienced, and provide perspective to those who can't relate personally.
Read Other Narcolepsy Stories
Click on the links below to read stories of others who have thoughts, experiences, and stories related to narcolepsy. They were all written by other visitors to this page, just like you.
Staying Safe With Narcolepsy
I was diagnosed with narcolepsy in 2018. I cannot watch movies and have to pull over while driving to have a 15 minute sleep at times.
I have tried …
Narcoleptic From Day One and Not "Failure To Thrive"
I was born in 1979 and 3rd in the line of siblings. I never cried in the middle of the night like my brothers did. My mom said she had to wake me up …
More Than Fifty Years to Diagnosis of Narcolepsy
This account is only roughly chronological given symptoms appearing, treatments, new approaches, plus changes in doctors, the advent of the internet, and …
Narcolepsy Nightmare
Hello, what a great website. Thanks to others who have posted their stories.
My life is a daily struggle with a narcolepsy nightmare. I hoped when I …
Discovering Narcolepsy With Cataplexy Through My Daughter
I'll never forget that phone call on that warm August day of 2012... "Mom I'm falling asleep at my desk" and in meetings...I didn't make much of it and …
Living With Narcolepsy - School, Demons, Getting Diagnosed
I was diagnosed with Narcolepsy at the age of 18. When I was 14 I started getting sleepy. I would drag myself out of bed in the morning totally exhausted. …
May All The People Who Have Been Diagnosed With Cataplexy Be Blessed With A Cure
Im the mother of my amazing daughter Jennifer, who at 25 one day in August...after living a year and a half in NYC on her own to be closer to work...we …
Narcolepsy: A Personal Story
If your child, student or employee falls asleep at inappropriate times on a consistent basis, please seek medical help.
Awake or deep sleep - no in-betweens …
What Does It Feel Like... My Child With Narcolepsy
Many friends and family members wonder what the big deal is... so she's a little sleepy now and then. So what if she laughs and falls... all little kids …
Dreaming Awake: Diary of a Narcoleptic
I got diagnosed with cataplexy when I was 14. My mother didn't believe me when I told her I kept falling over whenever I laughed, until she was with me …
Narcolepsy with Cataplexy Started In Older Age - Know A Doctor In Fort Worth, TX?
I was diagnosed in Sept of 2012 with narcolepsy with cataplexy after being tested at a sleep lab. I live in Abilene, Tx. which is in far West Texas about …
Babies Don't Get Narcolepsy? They Do. My Story.
From day one I slept most of the time (parents historical assessment). Walked at two years but crawled for 12 months. Kept falling over. Mother either …
I Have Narcolepsy & Severe Cataplexy and My Son, 12 Has Had Difficulty Going To Sleep Since He Was 1
Recently I am finding it extremely more difficult to wake him in the mornings and I am worried as he also shakes in his sleep. When he is asleep he does …
Excessive Sleep vs Narcolepsy. Failed Nuvigil, Biaxin Treatment...?
My son, 19, freshman in college, had to take medical withdraw because of a sleep disorder. He was diagnosed with narcolepsy 2 years ago based on MSLT …
And join the conversation with your own comments here:
blog comments powered by DisqusGo from People With Narcolepsy to Chasing The Narcolepsy Gene: An Interview With Dr. Emmanuel Mignot
Go from People With Narcolepsy to Living With Narcolepsy: An Interview
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Welcome! This site is continuously being created by students of Dr. William C. Dement's Sleep And Dreams course at Stanford University.
We made this site as a call to action for people all over the world to live healthier, happier, safer, and more productive lives by learning about their own sleep. We have faith that reading the information provided on this site will motivate you to be smart about your sleep deprivation and strategic about your alertness in order to live life to your fullest, most energetic potential.
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The Stages Of Sleep: The Journey Through The Night
Delayed Sleep Phase: You Want To Sleep But You're Not Tired Yet
Paralyzed at Night: Is Sleep Paralysis Normal?
Sleep In Words: Smart, Strange, and Funny Quotes About Sleep
Sleep Disorders In Children: What's Keeping Your Child From A Full Night's Rest?
Attacks of Pavor Nocturnus (a.k.a. Sleep Terrors, Night Terrors, or Incubus Attacks)
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Sleep Paralysis: A Dreamer's Guide
Ever woken up paralyzed? A surprising number of us have, believe it or not. But few know the actual causes of this phenomenon, and fewer still how to exert control over it. Dream researcher and sleep paralysis expert Ryan Hurd shares breakthrough insights into how to do just that.
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