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Narcolepsy is often misunderstood, dismissed, and dangerously underdiagnosed — especially in women. In this powerful Advocacy Series episode, we sit down with Dr. Anne-Marie Morse, a neurologist with specialized training in child neurology and sleep medicine, to talk about what real advocacy looks like, why diagnosis delays can stretch nearly two decades, and how patients can reclaim power in the healthcare system.

Dr. Morse breaks down one of the most important truths in sleep medicine: language matters. Words like tired, fatigue, and sleepiness are not interchangeable — and using the wrong one can lead to missed diagnosis and years of suffering.

We also discuss the emotional reality of narcolepsy: grief, identity, guilt, family dynamics, and why peer support and global community are essential. From workplace wellness myths to school system failures, this conversation is both validating and activating.

If you’ve ever felt unheard, minimized, or reduced to a score on a scale — this episode is for you.

In This Episode, We Cover:

• Why narcolepsy impacts an entire ecosystem (family, friends, school, work)

• The average delay to diagnosis — and why women face longer delays

• The difference between sleepiness vs tiredness vs fatigue

• Why you are NOT your Epworth Sleepiness Scale score

• The best question a doctor can ask: “What can’t you do?”

• The grief that comes with diagnosis — for patients AND families

• Why mental health support should be standard in chronic illness care

• How peer support can prevent isolation and long-term disability

• Why sleep should be treated like water — essential, non-negotiable

• How advocacy needs to become global to create real change

Key Takeaway

“We need to create treatment regimens that fit people’s lives — not lives that fit treatment regimens.”

Dr Ann Marie Morse

Resources Mentioned

Project Sleep

Hypersomnia Foundation

Wake Up Narcolepsy

Faces of Narcolepsy

Julie Flygare’s book: Wide Awake and Dreaming

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***If you find these symptoms relatable, please seek medical advice.***