Do Sleep Justice — Rachel Nesmith

One of the hardest symptoms of narcolepsy with cataplexy isn’t listed on any medication label, measured by a sleep study, or found in a brain scan. It’s the quiet battle that takes place in one’s own mind. Living with narcolepsy means fighting sleep every day. Living with…

People often ask me what living with narcolepsy with cataplexy is like. I usually explain the sleep attacks, the cataplexy (sudden muscle weakness), the vivid dreams, and the constant exhaustion. But sometimes the best explanation isn’t found in medical terminology. Sometimes it’s found in the stories that make you…

On a Friday evening in October 2006, I walked into the Narcolepsy Network’s annual conference in my hometown of Dallas, feeling both excited and nervous. I had been living with narcolepsy with cataplexy for several years, but this was the first time I would meet another person who truly…

On March 27, 2014, I was lying in a hospital bed preparing for my second liver resection to remove a rapidly growing hepatocellular adenoma. My family surrounded me as nurses completed the final preoperative checks. Then one simple question changed the course of my life. “Is there any possibility…

After my divorce in 2010, I wasn’t sure I would ever risk dating again. When my first marriage ended, I was carrying more than heartbreak. I was also living with narcolepsy with cataplexy, a condition that had already changed parts of my life that many people take for granted.

Imagine being the one person with narcolepsy who literally falls asleep on a chair, and then the floor, at a conference about hypersomnia. And I’m not talking about quietly nodding off. I’m talking about nodding and hitting my head on the way to the ground, with the side of…

When people hear narcolepsy with cataplexy, they often picture a life limited by exhaustion and uncertainty. The reality is that this condition has taken away things many people may take for granted, challenged my independence, and forced me to rethink how I live each day. But it’s never…

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…

Note: This column describes the author’s own experiences with Xyrem (sodium oxybate). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In 2010, I almost died from a cantaloupe-sized hepatocellular adenoma wrapped around my portal veins. People hear the word…