Narcolepsy Nerd Alert: Narrating Narcolepsy

Narrating Narcolepsy

Writing a book requires hard work, dedication, and ambition, but it’s a powerful way to share your authentic experience. Our authors shared some words of advice for each stage of the process:

I’ve come to see living with narcolepsy as one of the best qualifications you could have to write about sleep disorders.”

– Henry Nicholls

Getting Started

• You can tell your story without formal training as a writer.
• Choose your genre.
• Hone in on your book idea.
• Do your research.
• Plan it out.

Writing

• Trust what you think.
• Remember that narcolepsy is a complex topic.
• Don’t be afraid to slow down.
• Use your resources.
• Keep it real.

The journey between narcolepsy onset and diagnosis is complex and varied. Putting it in print gives power and voice to those who remain undiagnosed and are struggling.”

– Claire Wylds-Wright

Editing

• Consider asking for feedback from multiple people.
• Prepare for multiple rounds of revisions, some focused on smaller details, others on the big picture.
• Develop a system to track your edits.
• Once revisions are complete, look for opportunities to add meaningful final touches.

Publishing

• Explore options for signing a deal with a traditional publisher, or self-publishing your work.
• For traditional publication, you’ll need to submit a book proposal to a publishing house and if accepted, the publisher will have exclusive rights to print and disseminate the book.
• There are many ways to self-publish including via self-printing, print-on-demand, e-books, and audiobooks.
• Self-publishing gives the author more freedom in how to promote and share their book.

My hope is that people with narcolepsy continue to find ways to bring our stories to general audiences and the medical space.”

– Julie Flygare

Post-Publication

• Celebrate!
• Enter writing competitions.
• Offer audiobooks or translations.
• Don’t stress about how your book is being received by the public.
• You may find there are things you would change about your book after it’s published, and that’s okay.

The therapist I saw for two years after being diagnosed helped me process my narcolepsy experience and was also a huge part of my book experience. I really wish I had included her as a character.”

– Julie Flygare

More Key Tips & Takeaways

• Remember that everyone’s experience is unique and complex.
• Commit to the writing process sincerely.
• Trust your memory.
• You can share your story anonymously or use a pen name if you’re not ready to publicly disclose your diagnosis.

For more information on this topic, download the Narrating Narcolepsy toolkit!

Narrating Narcolepsy: Listen or Watch!

The Narrating Narcolepsy broadcast originally aired on April 27, 2022.

Meet Our Guests

Claire Wylds-Wright is an award-winning author and advocate for children with narcolepsy. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy charts her family’s journey from the UK to the USA in search of life changing treatment in an attempt to rescue their youngest child Mathilda, who developed narcolepsy following the 2010 H1N1 vaccine. Her work has been featured in national newspapers, medical journals and on national radio. Claire is the Co-Founder and CXO of Sleep Consortium—a 501(c)(3) dedicated to accelerating research in Central Disorders of Hypersomnolence and related diseases. In 2022 she was awarded an MFA from the University of St. Andrews for a substantial contribution to the creative non-fiction literature titled “Belonging—A Memoir of Home, Place, and Identity.”

Henry Nicholls is a teacher, science journalist and author, specializing in evolutionary biology, conservation, and the history of biology and sleep. He developed narcolepsy when he was 21, and his book Sleepyhead: The Neuroscience Of A Good Night’s Rest explores the neuroscience of sleep and the devastating impact sleep disorders have on physical and mental health. He lives in London.

Julie Flygare currently serves as President & CEO of Project Sleep. She is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy.