Waking Up Tired – Narcolepsy Symptoms Explained Podcast Episode Four
When I was first diagnosed with narcolepsy, I wasn’t handed a guidebook. No roadmap, no real explanation—just a steep learning curve I’m still navigating. That’s why conversations like the one in Episode 4 of Waking Up Tired matter so deeply.
In this episode, you will hear Dr. Aaron Shockman, a lived experience research fellow at the University of Sydney. Aaron’s personal journey with narcolepsy has shaped both his academic work and advocacy. Aaron’s story is raw, confronting, and heartbreakingly familiar to many of us living with invisible illnesses.
He describes the brutal reality of disrupted nighttime sleep—waking up 30 to 40 times a night—and the crushing impact it had on his ability to function, study, and maintain relationships. He shares how cataplexy, a lesser-known symptom triggered by laughter or strong emotion, led to terrifying episodes of paralysis while fully conscious. And he opens up about the emotional toll of being misdiagnosed, misunderstood, and left to do his own research just to find answers.
Aaron’s experience also highlights a critical issue in Australia: access to effective treatment. While sodium oxybate changed his life, it remains out of reach for many, with costs soaring up to $20,000 a year unless you can navigate a complex public hospital system. Meanwhile, stimulant medications and antidepressants—often prescribed as first-line treatments—can come with side effects that worsen sleep, flatten emotions, or even trigger aggression.
Aaron talks about the importance of support groups, the power of lived experience, and the urgent need for better public awareness. Because narcolepsy isn’t just about being tired—it’s about being failed by systems that don’t understand what tired really means.
If you’re living with narcolepsy or supporting someone who is, I hope this episode reminds you that you’re not alone. There are communities out there, like Hypersomnolence Australia, that offer guidance, resources, and solidarity.
Sleep should never be a luxury. It’s time we start treating it like the essential human right it is.
— Di Spillane
Host of Waking Up Tired
