Navigating narcolepsy doesn’t come with a roadmap, but it should. On January 27, 2021, we hosted a live event featuring President & CEO of Project Sleep. Julie Flygare, JD, to discuss what members of the narcolepsy community wish they knew at diagnosis.
Use the buttons below to jump to the different versions of this conversation.
“So, you’re feeling better, right?” This question can be frustrating when you’re newly diagnosed or adjusting to narcolepsy. Feeling “better” with a chronic condition is not always a linear process and can be overwhelming at times.
One useful way to think about the many aspects to navigating narcolepsy is to break the experience down into three categories: medical, social, and internal. Here are some common themes and practical tips for all three areas.
Even after being diagnosed for 17 years, I still recently had to relearn that my treatment will always be a journey and that I will never have ‘arrived’ at a final destination.”
– Katie
I have this weird relationship with my chronic illness where I spend 75% of my time trying to pretend it DOESN’T exist and the other 25% trying to explain that it DOES exist to a bunch of people who don’t believe me.”
– Anonymous
Living with a chronic condition is an ongoing process of inner negotiation between social and medical needs… shifting between illness-on-the-foreground and wellness-on-the-foreground.”
– Dr. Jane Sattoe
On January 27, 2021, Project Sleep hosted the “Narcolepsy Roadmap” live event to discuss what narcolepsy community members wish they’d known at diagnosis. This toolkit is our attempt to build that roadmap for others in the future.
Narcolepsy Nerd Alert toolkits accompany each broadcast. The toolkits are designed for people living with narcolepsy and their loved ones to offer new tools, tips, and perspectives on navigating narcolepsy.
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.
Whether you geek out about science, art, advocacy, or pop culture—this community is for you. Please sign up for updates on live broadcasts, video recordings, printable toolkits and exclusive prizes.
