A question for the Narcolepsy (Type 1) Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

I’m kind of going back and forth between “Narcolepsy: It Sucks,” and “Narcolepsy: It’s Not What You Think.” I think I’m probably leaning toward It’s not what you think, because there’s so much misinformation out there and so much… It’s the way that the people with narcolepsy are portrayed in movies, that’s all people know, so that’s what they think it is, and that’s not how it is. I do also wish like that people wouldn’t make fun of it because it’s a chronic debilitating illness, and you shouldn’t make fun of people who have chronic disabilities, because of their disabilities, but because people with narcolepsy fall asleep in weird places and it’s funny sometimes, I think people think there’s a pass on it. I don’t know. I would say the chapter that I’m on right now, I would call learning to cope and find hope while you cope, “Find Hope While You Cope,” yeah, let’s do that. Because I think that hope is so essential to wellness and well-being and a lot of times it’s easy to lose hope when you have a chronic debilitating condition. So, I think hope is essential in order to ward off discouragement. So that’s all I got, thanks for letting me share.

If I had to name my condition or my story of book, I would have to name it, “It Gets Better.” Learning how to manage and navigate life with narcolepsy. My current chapter would be probably “Learning How to Have Narcolepsy While Pregnant,” and how that has affected and changed my life and my diagnosis.

My book would be called “Tired.” I would call it just simply “I’m Tired” because it seems to be one of my favorite things to say all the time. It’s kind of funny really, but that’s true. The name of the chapter that I would currently be in would be, “I’m Still Tired 25 or 22 Years Later, Still Tired and I Feel More Tired.” I know that it’s not supposed to progress and get worse, but I do feel like it’s harder to control and treat. I don’t think that it gets worse, but I think maybe our ability to treat it is not as good as it used to be. And so I think that that’s what I would call it. And so that is all that I have to think of right now. Thank you.

If this was a book, I would call this “Daylight.” Before I was diagnosed with narcolepsy, I didn’t know why I was so tired and why I was going to sleep in strange places. When I was diagnosed, when I got the medication, I was able to function better, and I just wish I had that part of the story or basically that I could go back in time and prove my story. Then I think I could come further in corporate America.

“Am I Really Awake?” would be the title perhaps and the chapter I’m in is, “Do I Even Want to Be Here?”

The title of the book would be “If I Could Get Things Done While I Was Asleep,” because the amount of downtime that narcolepsy has, there’s so much productivity that you could be doing, and so that would be my title.

I don’t know. “Sleeping Through Sunrise,” maybe something like that. “Daydreamer.” oh, no, I would go with “Daydreamer.” And I can’t remember, honestly, the last part of the question, but I would want it to be something that would provide hope for individuals who struggle with this. And so many people, I think, are undiagnosed in our community that we don’t even know about because people just think they’re tired from their lives. And there’s such a difference. I mean, most people don’t just fall asleep and drop everything in their hands and sleep sitting up for hours on end without realizing it. And then lose all function of your muscles and fall over. That’s not normal. That’s not just, “I’m tired from a long night.” That’s something that needs to be investigated further. And I feel the more information that’s out there about the condition, the more people that can be reached who, perchance, might perhaps be undiagnosed.

Title for a book, I guess I would probably name it “The Endless Nights,” and my chapter would be, I’m not even sure, “In Between Sleep and Awake.” Just that complete in between there where you’re not sure if you’re awake yet or if you’re still asleep.

“A Napper’s Guide to Narcolepsy,” pretty much says the name in the title and why. The chapter I would be in would be “Learning to Live With Narcolepsy.” Right now the chapter would be about learning to cope as a family together with narcolepsy, and how it affects your children and your husband and your loved ones around you, how they’re feeling about it, how you can help them, how they can help you, and just adjusting to life with narcolepsy.

The book’s name would be “Sleeping My Life Away.” The chapter would be “Getting Through the Obstacles.”

That’s actually a good question. I’m not quite sure what the title would be. I guess, “The Life of a Narcoleptic” but I would be in the middle of that book, I definitely have this figured out now. But I don’t have all the answers. I’m still definitely trying to find more effective treatment, that’s not stimulants. I think the end of my book would be when they finally come up with a cure of narcolepsy, although they’re close, as I read previously. So yeah, I would definitely say I would be in the middle of that book.

The book would be called “Wake up: You’re Missing It,” and the chapter, I would call it, probably … I’m 51, so it would be in the middle of the book. I would probably call it “I’ve Woken up. Tell Me What I’ve Missed,” because that’s how I feel it. Now I can go outside. I can do yard work and come inside and not collapse. One time, I fell asleep in the garage and the mailman woke me up, so that’s not happening anymore. It’s a completely different life, so I’m quite thankful for that.

I think I would call a book that is about my condition, something along the lines of, “Always Sleeping, Always Dreaming.” The chapter I would be in would be “Hope.”

I’d probably title it, “What Was That?”, meaning that you fall asleep or you miss things often because you’re just so drowsy. The chapter I’m in now would be “Overhaul” because I feel like I push myself now until I just collapse.

I think the title of my book would be “Living Through a Dream,” and the chapter that I’m in is “Sleeping With My Eyes Wide Open.”

I guess the title of my book would be, like this T-shirt I have that says “She Wanted To, She Thought She Could, but She Was Too Tired, So She Didn’t.” What chapter I would be in would be “Questioning My Relevancy,” considering my condition and how it’s gotten worse and how the medications are not being as effective for me in this time period that I’m going through right now. I don’t feel like I’m doing enough. I don’t feel like I am enough for my family, for me, for my family and I question my place in my family right now, in my, I guess, kind of existence. Am I accomplishing and doing enough? Am I pushing myself as much as I can even with the narcolepsy.