About 7 years ago, I became known as the girl who sleeps a lot. My family and friends called it a “special quirk” of mine because I could sleep anywhere: the pool, the beach, or 9 hours in the car. It was something that no one else really did, but I never thought anything of it until I began experiencing confusing sleep-related episodes in college. Little did I know that this would later turn into such life-altering news: “You have narcolepsy.”
In my third year of college, I remember walking into class ready to learn with my large Starbucks iced coffee. When the professor began lecturing, I suddenly felt like there were weights tied to my eyelids. My head started falling and it was like I had been hit by a truck as I slowly became disconnected from class. A few minutes later I snapped out of it and looked down at my notes that had become complete chicken scratch. My arms were covered in nail marks from pinching myself, and I didn’t even know I was doing it.
Around the same time, I started experiencing strange dream-like episodes when talking to someone. One time in the middle of a conversation, I remember drifting off and dreaming that they were saying something else. I was confused. It felt like my dreams and reality were blurring together. I knew it was time to see a doctor after another incident where I slept through a fire alarm during a nap.
I saw my family doctor and was misdiagnosed with anxiety and depression since the symptoms were similar, and I was young and healthy otherwise. This was frustrating because I had to wait 6 to 8 weeks to see if any of the medications worked while still trying to focus on my schoolwork.
I was finally referred to a sleep doctor. After doing some research, I was considering that I could have narcolepsy. However, my only knowledge of narcolepsy was from what I had seen in comedic shows. I hoped that a sleep study would give me some answers, but I still asked myself, “What if this is just another dead end?” After living with symptoms for about 5 years and being misdiagnosed for a period of 2 years, it was a total of 7 years before I heard the words, “Your sleep study was positive for narcolepsy.”
I felt relieved that I had answers, but I was hesitant to say anything because many people were uneducated about the condition. I had to prepare myself to face the stigma that came with having narcolepsy. What will my friends think? Will my professors think I’m lazy? Some people laughed. Some people said, “I wish I could just sleep whenever I want like you.”
I was surprised to learn that, in reality, narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle and is often accompanied by other frightening symptoms. I also learned that treatment was going to be a journey, but with the right support system I could adjust properly. I learned to be patient with myself, how to take care of myself, and how to stand up for myself. Most importantly, I can use my experience to help others going through the same thing, and that is something I would never change.
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