In this inspiring episode of Narcolepsy Navigators, we sit down with Soheila, a 22-year-old from the north of France, to explore what it’s like growing up with narcolepsy. Diagnosed after years of symptoms and medical misunderstandings, Soheila shares her journey from confusion and isolation to self-acceptance and advocacy.
She opens up about navigating school, work, and friendships while managing sleep attacks, memory issues, and the stigma surrounding narcolepsy in France. From unsupportive managers to incredibly understanding friends, Soheila’s story is a powerful example of resilience, self-advocacy, and finding community.
We discuss cultural attitudes toward chronic illness, the importance of supportive healthcare providers, and how Soheila is now using her voice to raise awareness through her new French podcast on sleep disorders. In one of the most moving moments, she shares why she wouldn’t press the “red button” to cure her narcolepsy—and how it has shaped her into the strong, determined person she is today.
Episode Highlights:
00:00 – Introduction
05:00 – Navigating Work with Narcolepsy
09:15 – The Long Road to Diagnosis
14:00 – Finding Acceptance Through Support
17:00 – Family Reactions and Challenges
23:00 – Friends, Loss, and True Support
27:20 – Misconceptions About Narcolepsy in France
31:10 – What Needs to Change in Society
35:20 – Managing Symptoms and Daily Life
39:30 – Social Life, Dating, and Boundaries
44:14 – Advocacy and Launching Her Podcast
48:58 – Why She Wouldn’t Cure Her Narcolepsy
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***If you find these symptoms relatable, please seek medical advice.***
