Before my diagnosis, life was like ‘A Nightmare on Narcolepsy Street’

I’ve never been able to watch scary movies. Thanks to narcolepsy, which is characterized by uncontrollable urges to sleep at any time of day, the content of those movies would be recycled into my dreams and become a nonstop part of my day. Falling asleep throughout the day may sound harmless, but for me, it’s anything but peaceful.

Living with narcolepsy before I was finally diagnosed and started receiving treatment last year was like a scene from the 2017 psychological horror film “Get Out,” in which the main character would fall into what the film described as a “sunken place.” In that state, he could see, but his view of reality would recede further and further into darkness, until it was like he was floating in space. He could still see a small glimpse of reality through a tiny, distant window, yet no one could hear him. When he finally awoke from this state, tears would be streaming down his face from the horror he had faced.

In my reality with narcolepsy, sleep was painful, and it felt like I was being dragged underwater. Each wave of sleep was often accompanied by vivid nightmares and sleep paralysis. Being awake wasn’t an escape, either. My worst fears and memories overlaid my vision as I went through each day.

For example, I’d look out the window and see a family member hit by a car. I’d see someone hiding behind a corner while I was alone in a parking lot. My boyfriend’s face would morph into an angry, unrecognizable stranger. It didn’t matter if my eyes were open or closed; the horror movie kept playing. After a few years, I just got used to it — as much as anyone can get used to something like that.

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I couldn’t find a way out of that reality, so I adapted. I kept as many cute and colorful things around me as I could find. It was hard to take the frightening images as seriously when they were beside a smiley banana Squishmallow. I would look at my favorite photos to reorient myself. I strictly watched cartoons and comfort shows.

I devoured any resource I could find about being in the present moment. I read books about mindfulness. Therapy taught me techniques to ground myself. I used meditation apps and practiced my breathing. I had eye movement desensitization and reprocessing therapy, which aims to help people process repressed trauma. I tried lots of medicine. Yet, I still felt trapped between being awake and asleep.

I felt disconnected from the world around me. I became so accustomed to a baseline of constant sleepiness that I thought it was normal. I experienced depersonalization, as if I were watching a movie of my life or living in a dream. Someone would tell me a great joke, but I’d barely crack a smile. I’d get lost on a routine drive home from school. I’d find myself talking, unaware of what I’d been saying.

It was a really unstable emotional state to exist in. Small inconveniences led to immediate tears. Small joys lead to immediate tears. The best of it was feeling almost slaphappy, where anything could make me laugh. The worst of it was extreme confusion and fear, and forgetting where I was. I was like a half-alive zombie.

My diagnosis story would make a great psychological horror movie. When I was finally diagnosed, it felt like making it out of a cruel escape room. For years, I’d been directed to the same faulty exit of misdiagnosis, which left me trapped in my symptoms. I had to navigate the clues on my own. Finally, I managed to escape and started receiving the proper treatment, which has helped.

Today, I’m happy to report that my narcolepsy is a lot friendlier than it used to be. For example, I might think I recognize a stranger because their features will change. Or I’ll see a squirrel and think it looks just like my cat. I take preventive naps so that the horror movies remain at bay. You still won’t see me watch a scary movie, but after my experiences with narcolepsy, I think I could write a good one.

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.