This Story Might Save Your Life: Narcolepsy Review & Representation

This Story Might Save Your Life by Tiffany Crum is a newly published New York Times bestselling novel that successfully mixes mystery, thriller, and romance. In the book, the main female character, Joy, is living with narcolepsy.

This has led some readers to wonder, “How accurate is the narcolepsy depiction?” Here’s everything you need to know (without spoilers!) about this fictional portrayal of narcolepsy. 

Breaking Narcolepsy Stereotypes in Fiction

Narcolepsy is often misrepresented in fictional portrayals (especially in movies and TV shows) as a person collapsing over suddenly and violently, supposedly falling asleep, for comedic effect. In contrast, This Story Might Save Your Life portrays a more realistic version of this serious neurological condition which impacts 1 in 2,000 people worldwide. 

The author makes a point of including multiple symptoms of narcolepsy, including excessive daytime sleepiness and hypnagogic hallucinations. Joy’s experience with narcolepsy is woven in throughout the plot, rather than used as a joke or convenient plot device. 

Do people with narcolepsy confuse dreams with reality?

In the book, Joy experiences hypnagogic hallucinations around sleep. Readers may be wondering, “Is this really a part of living with narcolepsy?” Yes, this is a fascinating and major symptom of narcolepsy that is under-discussed and rarely included in fictional portrayals. These visual, auditory, or tactile hallucinations (upon falling asleep or waking up) can be frightening and confusing. In addition, they are often accompanied by sleep paralysis: the inability to move for a few seconds or minutes upon falling asleep or waking up.

It’s important to know that people without narcolepsy can also experience hypnagogic hallucinations and sleep paralysis, usually during periods of high stress, sleep deprivation, or medication changes. These often resolve when the stressor does. However, for people with narcolepsy, hypnagogic hallucinations and sleep paralysis are much more consistent over time. 

Listen to our podcast on this topic here.

Joy’s Diagnosis and Treatment Journey

Another notable aspect of the narcolepsy storyline is Joy’s diagnosis and treatment journey. This is rarely shown in fiction, so by mentioning that Joy underwent sleep studies at age 16 before receiving an official diagnosis raises awareness that narcolepsy is a real neurological condition treated by sleep specialists.

Joy’s experience in This Story Might Save Your Life also reflects the reality that managing symptoms, treatments, and side effects is an ongoing, non-linear process. Narcolepsy can appear very different from day to day. As many people often describe, “Narcolepsy doesn’t get better, we just get better at managing narcolepsy.”

How’s Your Sleep?

If any aspect of Joy’s experience makes you question your own sleep or daytime wakefulness, it’s important to know that sleep disorders are common but often missed. In fact, one in five Americans is living with a chronic sleep disorder, but the majority are undiagnosed. 

Our Talking to Your Doctor About Sleep Issues toolkit provides an overview of various sleep disorder symptoms and how to talk to your doctor or healthcare provider about sleep issues. It’s important to know that not all doctors are familiar with sleep disorders, so you may need to advocate for yourself to receive a referral to a board-certified sleep specialist who can properly evaluate your symptoms.

Why This Book Matters for Narcolepsy Awareness

Accurate portrayals of health conditions like narcolepsy in fiction play an important role in increasing awareness and reducing stigma. This is why Project Sleep works with Hollywood to develop accurate storylines of people living with sleep disorders and educates the media on how to responsibly cover sleep health and sleep disorders. Project Sleep also trains patient advocates to raise awareness through storytelling via the Rising Voices program.

This Story Might Save Your Life stands out as one of the most thoughtful, realistic, and nuanced fictional depictions of the condition to date. Huge thanks to author, Tiffany Crum, for crafting such a well-researched, compelling character portrayal with Joy. 

Let us know your thoughts and questions in the comments below!

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