Living with a chronic medical condition like narcolepsy can be isolating, especially if you don’t know anyone else with the sleep disorder. Fortunately, there are books available that can educate you and others about the condition — and that can provide a sense of connectedness with people who understand daily life with narcolepsy.
Books on narcolepsy can foster a person’s understanding of the condition as authors share their experiences managing symptoms like excessive daytime sleepiness; coming to terms with their diagnosis; or dealing with narcolepsy at work and at home. They can help the reader gain insight into their relationship to narcolepsy. Moreover, some books are aimed at loved ones — both young and old — to help them better understand the complexities of a friend’s or family member’s narcolepsy.
Here, we will take a look at six books — three for older readers and three for children — that provide firsthand accounts of the narcolepsy experience.
These three books offer firsthand accounts of life with narcolepsy, either from a person living with the condition or caring for someone who has it. They have garnered positive reviews from readers and critics — and a couple have earned awards.
One of the most well-known books addressing the topic of narcolepsy, “Wide Awake and Dreaming: A Memoir of Narcolepsy” by Julie Flygare, is the winner of the 2013 San Francisco Book Festival Award for Biography/Autobiography. Beginning with the author’s first experience with cataplexy (her knees buckled after sharing a fit of laughter with her then-roommate), “Wide Awake and Dreaming” tells the story of a young woman who was shaken by — but ultimately thrived because of — her diagnosis of narcolepsy.
“Sleepyhead: Narcolepsy, Neuroscience and the Search for a Good Night” was written by Henry Nicholls — an author and biologist diagnosed with narcolepsy at the age of 21. This book chronicles the author’s quest to uncover the science behind sleep disorders, from the causes of his symptoms (including cataplexy, sleep paralysis, and hallucinations) to the ways those symptoms may be treated. “Sleepyhead” is a humorous take on sleep and sleep disorders, following Nicholls through a cognitive behavioral therapy class to a meeting with narcoleptic Dobermans, with many stops in between.
In “Waking Mathilda: A Memoir of Childhood Narcolepsy,” author Claire Crisp details her family’s search for a life-changing treatment for her daughter with narcolepsy. Following the family from their home in England to the Stanford Center for Narcolepsy Research in California, “Waking Mathilda” tells the story of a mother’s commitment to supporting her daughter through the hardships and triumphs of life with chronic illness. Crisp won the silver medal for Non-Fiction/Memoir in the 2017 Readers’ Favorite Book Awards for the book.
In 2015, Crisp received the Narcolepsy Network’s Patient Awareness Award in acknowledgment of her advocacy for children living with narcolepsy. Her blog discusses many subjects faced by parents of children with narcolepsy, including self-advocacy and how to talk with children about their chronic illness.
Author Amanda Stock first experienced symptoms of narcolepsy at the age of 16 — and was not diagnosed until age 26. She went on to write a series of books titled “Talking to Kids About Narcolepsy” — illustrated with photographs of scenes built with Legos — which aims to foster conversations between caregivers and children about the condition. Her inspiration: to have a way to talk about narcolepsy with her own daughter.
Following are three books from Stock’s series, each of which focuses on specific symptoms of narcolepsy.
“Sometimes My Socks Are in the Freezer” is told through the lens of a child describing her mother’s experience with automatic behaviors — a symptom of narcolepsy in which a person continues to talk or behave normally while half asleep. The person is often left with no memory of what they were doing after waking.
As MyNarcolepsyTeam members have shared, explaining automatic behaviors to others can be a challenge. “I’ve had conversations with someone,” wrote one member, “and boom — I fall asleep. Then, I wake back up and continue the conversation. That’s really creepy to the other person.”
Stock recognizes the difficulty of describing narcolepsy symptoms to others and that explaining the condition can be even more challenging with children than with adults. “Sometimes My Socks are in the Freezer” explains automatic behaviors in a way that children can understand. It includes follow-up questions to help foster discussions between family members.
In “Sometimes Mommy Falls: A Book about Narcolepsy and Cataplexy,” Stock focuses on cataplexy — a symptom of type 1 narcolepsy in which a person experiences sudden muscle weakness as the result of strong emotions. As with other books in this series, “Sometimes Mommy Falls” is told from the perspective of a child. It explains how cataplexy can interfere with daily life and relationships, especially between parents and children.
Stock’s book “My Dad Naps Too! A Book About Narcolepsy and Excessive Daytime Sleepiness” revolves around a child’s understanding of her mother’s narcolepsy — in particular, a symptom known as excessive daytime sleepiness (EDS). EDS is characterized by an uncontrollable, excessive feeling of sleepiness during the daytime, regardless of whether a person has had sufficient sleep. Like the other books, “My Dad Naps Too!” uses a child’s perspective to explain narcolepsy in an accessible, easy-to-understand manner. It includes questions to spark discussions about EDS and other narcolepsy symptoms.
MyNarcolepsyTeam is the social network for people with narcolepsy and their supporters. Here, more than 7,900 members from around the world gather to ask questions, offer support and advice, and share stories of everyday life with narcolepsy.
Have you read any books about narcolepsy that you’d recommend to other members? Share your recommendations in the comments below or by posting on your Activities page.