• ak

What is it like living with Narcolepsy?

Debilitating.

Robbing.

Depressing.

Exhausting,

Anxiety-inducing.

Humiliating.

Need I go on?


September 22nd is World Narcolepsy Day. Yesterday, I couldn't quite find the words to express how much this disease has stolen from me. But that's the thing about robbery- we don't see it until we notice something is missing.

The thing about autoimmune disorders is that they don't steal from you just once. They come back. Every. Single. Day.


When I was younger, I was really invested into my swimming hobby. I competed all over the nation, and when I was not at school, I was preparing for the next competition in the pool. The sport robbed me of any chance I had at a friend group in high school. My friend group was my teammates, which I was fine with. Until Narcolepsy happened.


I didn't know what was happening to me. What used to be a warm-up, now felt like a National Team workout. I was so frustrated with my lack of energy because no matter how much sleep I got, food I ate, energy drinks I drank, I was still too tired for anything. By 11th grade, I had a choice to make: swim and do school online, or stop swimming and attend a real high school. I chose the latter.


There are 3 traumatic instances I remember in regards to Narcolepsy.


One was losing my swimming.

It seems minuscule in retrospect, but at the moment of my diagnosis it felt like every hour I had spent in the water was for nothing. 20 hours a week, year round, just to stop.


The second was when I went to the real high school.

I hadn't yet been treated for Narcolepsy, and every day was a struggle to get out of bed. I fought to stay awake in class. For years, I thought the only people who could possibly be offended by my sleep attacks would be teachers. This school proved me wrong...


I remember getting a long DM from a girl in my grade, telling me how immature and rude I was to fall asleep during her presentation. She was so angry. I didn't know what to say- "I'm sorry- I have an untreated, crippling sleep disorder that I cannot control"? Apologizing for a medical condition seemed utterly unaccommodating and submissive. On top of this, I realized that I didn't have class with this girl. We watched videos of everyone's presentations, which means someone in my class section went out of their way to tell her AK had fallen asleep during her presentation. At this realization, her angry paragraphs and keyboard courage, I broke down crying. My mom came in and found me with a wet, splotchy, red face in a fetal position on the floor. I felt so defeated. My body was working against me, and in turn, making my new classmates hate me. In that moment, there was nothing I could do but take this girl's wrath.


The third was falling asleep in one of my classes.

Haha, I know. Laugh all you want. But seriously- there is nothing more hopeless than explaining to a teacher that you didn't fall asleep in their class out of boredom. For reasons I don't understand, the sleep disorder was something none of my mainstream teachers could quite understand. Some understood better than others, but I remain confident in saying none of them really put themselves in my shoes.


I remember vividly getting told to stay put as my teacher dismissed the rest of the class. I looked at one of my close friends desperately, and she returned my panic with a look of pity. Tears rolled down my face in frustration, humiliation, and exhaustion. I wanted all of this to stop- if I just didn't have Narcolepsy, this wouldn't be happening.


She asked me why I fell asleep. I couldn't answer. The lump in my throat grew to the size of a wiffle ball, all I could do was cry.


So what is World Narcolepsy Day?


It's a day where those suffering from the disease spread awareness and stories. It's a day where Narcoleptics are acknowledged for how strong we have to be to get through life. It's a day where we stand in unity and try our best to explain that naps are not a luxury when they are a necessity.


I urge you to have patience with your sleepy, "lazy", ditzy friends. Just because you can't see the neurological imbalances by looking into their eyes, doesn't mean they are not there.


Feel free to check out Project Sleep, Wake Up Narcolepsy, and the Narcolepsy Network to learn more about this disorder, what it looks like, and why it needs our attention.


All the Peace,




AK.



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