The day narcolepsy with cataplexy left me trapped in an airport
A frightening ordeal last year changed the way I travel
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Traveling with narcolepsy and cataplexy can feel like a carefully managed gamble. Most trips go smoothly. But all it takes is one delay, one stressful situation, or one exhausting day for everything to unravel.
That is exactly what happened in June 2025 as I tried to get home to Dallas after attending SLEEP 2025, the Associated Professional Sleep Societies’ annual meeting, in Seattle.
The trouble started before I ever reached my gate. I had requested airport assistance because traveling alone with narcolepsy and cataplexy can be difficult. I waited so long for help getting through security that by the time I finally reached the terminal, I was already drained.
The big letdown
Then my flight was delayed. Not briefly, but long enough that I remember thinking I could have spent those extra hours with friends instead of sitting in the airport growing more exhausted. Eventually, I was reassigned to another flight, which meant more waiting, more uncertainty, and more stress.
Then came the worst part. The airline changed terminals and, somewhere in the confusion, I was forgotten while sitting in my wheelchair. I sat there for hours — tired, frustrated, and emotionally spent. More than anything, I wanted to go home.
That is when the cataplexy hit and quickly escalated into status cataplecticus, a prolonged series of cataplexy episodes. First, I felt weaker. Then I went limp. Soon, I couldn’t move at all.
What makes severe cataplexy so frightening is that I remain aware of what is happening around me. I could hear airport staff talking. I could hear concerned passengers asking questions. I could hear the worry building as people realized I was not responding, even though, mentally, I was fully present.
No one knew what was happening. People wondered if I was having a heart attack or a breathing emergency. Someone mentioned low blood sugar. Their concern was real, but the truth was something most people had never heard of: narcolepsy with cataplexy.
Even fewer people know that cataplexy can sometimes become prolonged. As I sat trapped inside my own body, I heard someone say that if I could not respond, they would need to call medics. Another worried I would miss yet another flight. Inside, I was screaming. I wanted to move. I wanted to explain. I wanted to tell them that I was still there.
Reanimation mode initiated
Eventually, what felt like an eternity passed, and movement slowly returned. By then, medics had arrived and were trying to determine what was wrong and whether I was safe to board. As soon as I could speak, I began explaining: No, it was not my blood sugar; my glucose readings were normal. No, it was not my heart. No, it was not a breathing emergency. It was cataplexy.
To the medics’ credit, they listened carefully and asked thoughtful questions. I explained how narcolepsy and cataplexy are connected and how emotional stress, exhaustion, and overwhelming situations can trigger episodes. That day, two more healthcare professionals learned about a rare neurological disorder that many people still do not recognize.
Eventually, I was medically cleared to travel and finally boarded my flight home to Dallas. The ordeal ended, but it changed the way I travel.
Travel accommodations
Rachel Nemsith attends SLEEP 2025 in Seattle. (Photo by Tara O’Connor)
Since then, I have taken steps to make future trips safer. I now wear a Hidden Disabilities Sunflower lanyard and carry an identification card explaining my condition and symptoms. I also wear a medical alert bracelet engraved with vital information about my narcolepsy with cataplexy, type 2 diabetes, and other medical conditions. One of the most important messages on it is simple: “If unable to speak, do not panic.”
I have also purchased TSA PreCheck to make getting through security easier, and I know now that tools such as medical ID bracelets, disability lanyards, emergency information cards, medication plans, and prearranged assistance can make travel safer. Programs such as TSA Cares can provide added support for travelers with disabilities.
Living with narcolepsy means accepting unpredictability. I cannot control every delay or every stressful situation, and I cannot always prevent symptoms. What I can do is prepare.
I hope I never experience another airport episode like the one in Seattle. However, if I do, I know I will be better equipped. Narcolepsy may travel with me everywhere I go, but it will not stop me from finding my way home.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
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