Narcolepsy Community Views: World Narcolepsy Day 2025

For World Narcolepsy Day 2025, we turned to the narcolepsy community to find out what it's really like to live with this neurological sleep disorder. Their raw, honest, and often powerful responses highlight the unseen struggles and surprising realities of living with narcolepsy.

Best narcolepsy captions to the above picture

• CommunityMember082736: "Broken battery, a redundant curse of loneliness and social stigma."
• beth9513:"Narcolepsy life=battery never fully charged."
• CommunityMember689: "My battery never fully charges nor hold its charge. No matter how much sleep I get, I always wake up feeling drained."
• blemons:"I only experience life through the prison bars of my exhaustion."

Realizing many misconceptions exist about narcolepsy

• HeatherA:"It makes me crazy that people think narcolepsy is funny. Sleeping is our most vulnerable state!"
• SueO:"Friends being angry when you have to cancel at the last moment."
• Shortnapz:"That I'm lazy and I just don't try hard enough it's pretty much everybody."
• Linn:"That the only symptom is falling asleep everywhere, all the time. Often in strange places and positions."

Surprising narcolepsy symptoms

• CommunityMember390:"Sleep anxiety. Waking up is such a horrible experience everyday that I've come to dread it to the point where I fight going to sleep at night."
• CommunityMember80384a:"The brain fog and lack of motivation. There are times when your energy is high and you're very productive, but once the tiredness hits, you are done."
• NeverendingZzz:"Olfactory hallucinations."

The most frustrating narcolepsy symptoms

• Ziza:"Fundamentally not being able to regulate when I go to sleep and when I need to wake up on a daily basis. It’s the most disruptive and stressful part."
• Natasha66E:"Simply blinking ur eyes one second and find that you were not blinking you simply closed your eyes and were out. There is no dreaming that happens so u are unaware that you are even sleeping. But family members or coworkers are more than happy to tell you all about it."
• Vlbarber:"Mine is the absolutely, overwhelming excessive daytime sleepiness that hits me out of nowhere; is uncontrollable & overpowering. That's the best way I know how to describe it, and it still isn't even close."

Are you inspired to share your personal narcolepsy journey? Tell your story and shine light on what life with narcolepsy is like!