Friends + Family + Narcolepsy | Narcolepsy Nerd Alert

Supporters mean everything! How can people with narcolepsy and their loved ones foster communication and mutual support? Narcolepsy advocate Lauren Thomas and nurse and mother to a person with narcolepsy Anne Taylor share their insights in “Friends + Family + Narcolepsy.”

Whether you are a person living with narcolepsy or a supporter, the fact that you are looking for resources is HUGE and very meaningful. This shows how much you care about your relationships. We hope some of the ideas shared here will resonate and help spark new conversations and connections.

Use the buttons below to jump to the different formats of this conversation and download the Friends + Family + Narcolepsy toolkit for more information.

Recording

Toolkit

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Transcription

Download the Friends + Family + Narcolepsy Toolkit

Narcolepsy Nerd Alert toolkits accompany each broadcast. These guides are designed for people living with narcolepsy and their loved ones to offer new tools, tips, and perspectives on navigating narcolepsy.

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Supportive Actions

Here are some ways one can support a friend or loved one with narcolepsy through one’s actions.

Learning about narcolepsy
Using educational resources as a conversation starter
Helping with medical needs
Attending conferences and/or support groups
Participating in awareness or advocacy activities, social media, or fundraising campaigns
Being flexible with plans
Providing tangible help
Balancing support with independence
Respecting boundaries
Showing up in different ways and on different timelines

My mom believed that something was wrong with me despite what doctors said and that was so important to me. She pushed me to find answers and didn’t let me give up.”

– Jenn

Supportive Communications

Here are some insights for communicating with friends and loved ones about narcolepsy.

Remember that asking for help is hard
Assess invisible and shifting symptoms
Know when to give advice, and when to just listen.
Allow for sadness
Avoid the temptation to make it about you

Just Checking In

It can be difficult to know what to say when you’re concerned about a friend or loved one. This infographic, recommended by panelist Lauren, gives examples of supportive questions to use as a starting point.

Understanding that not everyone can show up for me in the same way has helped me recognize and appreciate all the different types of support I do get.”

– Richelle

For more information on this topic, download the Friends + Family + Narcolepsy toolkit!

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Friends + Family + Narcolepsy: Listen or Watch!

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Friends + Family + Narcolepsy Video Part I

Friends + Family + Narcolepsy Video Part II

The Friends + Family + Narcolepsy broadcast originally aired on April 28, 2021.

Meet Our Guests

Lauren Thomas is an advocate, a daughter, and a friend living with narcolepsy with cataplexy. She was diagnosed in 2019 after a long journey with misdiagnosed sleepiness. Lauren loves to share her story and resources to help others make their situation a little better.

Anne Taylor, RN, BSN, is a mom to two daughters, a nurse of over 22 years, and, with her husband, runs a company that offers evidence-based music intervention in hospitals. Anne also serves on the Board of Directors for Project Sleep and is a supporter for her sixteen-year-old daughter living with narcolepsy.

Resources

Here are some of our favorite resources. We look forward to hearing what our fellow #NarcolepsyNerds find useful for navigating narcolepsy!

Major US Organizations:

Hypersomnia Foundation
Narcolepsy Network
Project Sleep
Wake Up Narcolepsy
- Online support groups

International Organizations:

Listed on Project Sleep’s World Narcolepsy Day webpage

Other Sleep Disorder Organizations:

Finding Your Sleep Healthcare Team
American Academy of Sleep Medicine’s Sleep Center Directory
Hypersomnia Foundation’s International Directory of Healthcare Professionals who treat idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome

How To Be Sick by Toni Bernhard
I Am Getting a Sleep Study! by Joshua Roland and Roberta Leu
Medical Gaslighting: How to Get the Care You Deserve in a System that Makes You Fight for Your Life by Ilana Jacqueline
Sleep, Interrupted: A Physician Reveals the #1 Reason Why So Many of Us Are Sick and Tired by Stephen Y. Park
Sleepyhead: The Neuroscience of a Good Night’s Rest by Henry Nicholls
Surviving and Thriving with an Invisible Chronic Illness by Ilana Jacqueline
Syncopation – Dancing with Narcolepsy & Cataplexy by Elaine Golden
The Sleep Fix: Practical, Proven, and Surprising Solutions for Insomnia, Snoring, Shift Work, and More by Diane Macedo
The Women’s Guide to Overcoming Insomnia: Get a Good Night’s Sleep Without Relying on Medication by Shelby Harris
There is No Good Card for This by Kelsey Crowe
Waking Mathilda by Claire Wylds-Wright
Wide Awake and Dreaming: A Memoir of Narcolepsy by Julie Flygare

Narcolepsy 360 – Podcast by Wake Up Narcolepsy
The Project Sleep Podcast
This Is Not What I Ordered – Podcast by Lauren Selfridge

Narcolepsy Quick Facts
Narcolepsy Infographic
Narcolepsy: Not Alone website
Harvard’s Narcolepsy website
Stanford’s Narcolepsy website
Narcolepsy 360 – Podcast by Wake Up Narcolepsy
World Narcolepsy Day page – Narcolepsy infographics and information in English, French, Spanish, Dutch, Danish, Polish, Portuguese, Chinese, Japanese, and Arabic

Project Sleep’s Sleep Helpline

Project Sleep’s Sleep Helpline™ is a nonprofit-led free national helpline providing personalized support and resources for people facing sleep issues and sleep disorders.

Get Personalized Information & Support

1-800-819-2043

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Project Sleep’s live broadcast series Narcolepsy Nerd Alert takes a deeper dive into specific topics related to narcolepsy. Hosted by award-winning geek Julie Flygare, each live event invites fellow #NarcolepsyNerds to explore unique aspects of the narcolepsy experience, contemplate bold questions, and learn from each other.

View all broadcasts and explore upcoming topics on our Narcolepsy Nerd Alert page.

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