During my first year of suffering from narcolepsy, I was misdiagnosed with mono. Thankfully, it only took one year from my first narcolepsy symptoms for my mom and I to figure it out.
I was sixteen years old when I first started developing narcolepsy symptoms. It was the late fall of my sophomore year of high school, and I was about to turn seventeen years old.
I am turning twenty four years old in a few hours which means that it has been eight years since my journey with narcolepsy began. So much has changed in the past eight years. It is weird to think of myself at age sixteen trying to make sense of the things that were going on in my body. I don’t remember everything, but I remember knowing so much less than I know now.
Before narcolepsy, my life was centered on academics, soccer, and my social life. I hardly slowed down, and my soccer coach nicknamed me “the Energizer bunny”. I remember my mom telling me that I was going too hard and that I was bound to crash and burn at some point. I don’t know if developing narcolepsy at that time can be considered the same as crashing and burning, but that is what it felt like to me.
I had no idea what was going on with my body for the first full year. I noticed that I was extremely sleepy, but the doctor I saw never mentioned anything within the realm of sleep disorders and misdiagnosed me with mono instead.
During the second semester of my sophomore year, I fell asleep every day in my Spanish 3 class after lunch without realizing it until I woke up. I was frustrated and embarrassed. A boy in my class started a rumor that I smoked weed because he thought I looked high when I fell asleep in class. I didn’t worry about the rumor too much, though, because I figured that most people could tell the difference between falling asleep and being high.
Letting go of a false hope in mono
I could still be undiagnosed with narcolepsy today if I didn’t suffer with cataplexy as one of my main symptoms.
Cataplexy is torture.
It is sudden, uncontrollable, and transient muscle weakness that is triggered by strong emotions. I am completely conscious the entire time, but I have no ability to stop it from occurring. I have experienced it the most through the emotion of laughter, but I have also experienced it with a wide range of emotions. Sometimes cataplexy means that I have to stop walking when I tell a joke, and sometimes it means that I am going to collapse to the ground when I am embarrassed.
After experiencing cataplexy to the point of collapse during my junior year of high school, I came home and told my mom that what I was experiencing was not normal, even for a person with mono. At the beginning, I wanted to believe that I had mono because mono is a treatable virus that usually lasts no longer than a few months. But as my symptoms persisted, I had to let go of my hope in mono, and, after my collapse, I just wanted to know what I was actually dealing with.
The evening that I told my mom about my collapse, she Google-searched the words “laugh induced falling”. Not long afterward, she was showing me a description of narcolepsy with cataplexy and asking me what I thought. Reading the description felt like reading what I had been trying to articulate for the past several months. From then on, I had no doubt in my mind that I had narcolepsy with cataplexy.
Finally moving forward
My mom and I went to the same primary care doctor that had diagnosed me with mono to inform him about narcolepsy and to get a referral to a sleep specialist. The doctor said that he’d never considered narcolepsy because it is so uncommon. He was shocked to have a patient that most likely had it and did not hesitate to refer me to a sleep specialist/neurologist.
It took several appointments with the sleep specialist and an overnight sleep study for me to be officially diagnosed and prescribed medication. Figuring out the best treatment for me was another journey after the diagnosis.
I believe that my diagnosis was delayed because I suffered from depression and social anxiety during the second semester of my sophomore year when I was first dealing with unknown narcolepsy symptoms. Laying in bed all day doesn’t seem that weird if you are depressed and struggling with mono.
I now know that my experience with depression was affected by experiencing undiagnosed narcolepsy symptoms, but at the time, all I knew is that I hated how I felt most days. For a full year, my lack of motivation and extreme tiredness were diagnosed as both mono and depression symptoms – and nothing more.
That first year of experiencing narcolepsy symptoms feels both far and close to me. On one hand, I feel like I have grown so much since then and that so much of what consumed me then feels small to me now. But even with eight years of distance from the development of the disorder, I still feel sensitive to the memories, and I know that each one was formative to my development.
I want the people I care about to know what I have experienced and to empathize with me. I want the world to have compassion for those that are undiagnosed or misdiagnosed and suffering alone in silence.
The statistics say that narcolepsy affects an estimated 1 in every 2,ooo people in the United States, but it is also estimated that only 25% percent of people that have narcolepsy have been diagnosed and are receiving treatment. That breaks my heart.
Living undiagnosed with narcolepsy felt like living in darkness. I never wanted narcolepsy, but the day that my mother showed me the description of the disorder online, I felt like the light had finally turned on. I felt like I knew something was not right, but I couldn’t see it until then. It felt wonderful to know that what I was dealing with was a real condition that other people suffer with too.
It felt like I could finally move forward.