Michelle's Story Part I: Developing Narcolepsy | Rising Voices of Narcolepsy Video Series

Michelle started feeling a heaviness at a young age. She began losing her grip on her tennis racket. One day, she awoke to a strange man outside her bedroom.
Michelle visited multiple doctors and received several misdiagnoses before finding a neurologist who would change her life.
ABOUT MICHELLE: Michelle is a designer, photographer, and gummy bear enthusiast living in Connecticut. She was diagnosed with type 1 narcolepsy with cataplexy after 20 years with the condition. As a trained speaker with Project Sleep's Rising Voices of Narcolepsy program, she hopes to spread awareness and help others get diagnosed.
RISING VOICES OF NARCOLEPSY is a leadership training program developed by the non-profit Project Sleep, aiming to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to share their presentations via this video series, so that their stories can reach more people around the world.
Please share to help raise critical narcolepsy awareness!
Get Involved : project-sleep.com/rising-voic...
Request a Rising Voices of Narcolepsy speaker for your event or writer for your publication: project-sleep.com/rising-voic...

[@FreeLee123]

Thank you for posting this video

[@napturalgoddess6602]

Yesss! I felt free after being diagnosed with Ideopathic Hypersomnia! Someone listened!

[@dreamwalker2518]

I immediately knew exactly what you meant as soon as I read morning hands lol.

[@lindsayjohnson5893]

Omg thank you so much!!!!! This is me!!!!

[@thirteenmoons13]

Michelle, thank you so much for sharing your story. It almost made me cry to hear your emotion describing your tennis racket. There is so there's so much that affects us emotionally that we train ourselves to stop doing to stop weird stuff from happening that it's almost a cut off of another you, the before and after cataplexy when it gets real and not so funny anymore, that I want to share that I feel so deeply for your struggle getting diagnosed. It's a heartbreaking thing to know what was normal as a kid that no longer is possible now, although there is so much that is still possible that we keep our heads high and inevitably continue to challenge our boundaries as narcoleptics because otherwise what is life. It's learning. We have a stranger experience than most, for real. I too have those same migraines and remember getting a first as a kid and a big 2nd as a teen unable to even state my own name confused to hell at the school office to tell them to call my dad, someone else had to say what it was. So many stories. I desperately want to be participating in life more than I can, maybe that never goes away. It never feels fair. It always could be worse, so there's still gratitude. You are special, in a very special way. We all are, and while there is so much that in this capitalist reality we live in that is massively hard to overcome for functionality purposes, I think most other narcoleptics I've met have a greater than average heart, ability to help others who are struggling because we know struggle, to inspire, to channel creativity into healing and give hope through our differences and our successes despite difficulties. Walking 2 worlds, having an immense power of intuition, your light always will shine brighter than most, dreamwalker. Know that. Others see this I'm sure more than they see anything else narcolepsy related, and value you for it in their lives so much.

[@StubornnD]

This is so hard to watch. It took me sooo long to get here and I'm still scared to be here. But I have to thank you. All I've ever had is my experience with narcolepsy. Hearing someone else describe what I've gone through so accurately gave me somewhat of a release of being in this eternally alone.

[@pennymeads]

Could it be Michelle that Cataplexy/Hypnogogic hallucinations came first, then sleep paralysis then Narcolepsy? I believe mine to be Sleep paralysis then wonky in the head, eyes jumping up and down, Caraplexy,then narcolepsy. For what it’s worth.