“After having a variety of bizarre symptoms arise in the year prior, I was diagnosed with Narcolepsy with Cataplexy one year ago today (August 20th). While I’ve spent the last year getting accustomed to a new normal in life (stopped driving and sold my car, switched to decaf and virgin drinks, gained and lost 35 pounds, blocked my work calendar for naps), the most significant experience I’ve had is observing everyone surrounding me.
My girlfriend, Isobel, has doubled her role in our relationship at least five times. From catching me when my legs give out and reading every paper on narcolepsy she can find, to being the most supportive and empathetic person I could imagine, she has amazed me at every turn.
I’ve met doctors, researchers, and pharmacists that have dedicated their lives to pushing the frontiers of defining, diagnosing, and treating people with Narcolepsy and Hypersomnia. Incredibly intelligent people that could easily hold any position they want, but every day, choose to pursue new solutions to help others like myself.
I’ve met people that run charities to connect people with Narcolepsy and educate those without it.
I’ve met a community of almost 50k on TikTok that have shown more love for a complete stranger than I ever thought possible.
I’ve worked with Rare Patient Voice, helping to connect researchers with those impacted by narcolepsy, because we’re not exactly common.
My story is not one of being diagnosed with Narcolepsy. It’s a story of a community of selfless individuals rallying to improve the lives of others. Without every patient testimonial, every research study, every social media follower, every family member, and every act of service, I would have no story at all.
To everyone that I know and everyone I don’t, thank you for your support of those with Narcolepsy and every other disorder out there.”
