More Than Sleepy
Last updated: October 2021
For this #WorldNarcolepsyDay, I wrote a bit about what narcolepsy has been for me in an effort to raise awareness.
Narcolepsy is more than just being “sleepy” all the time. It’s not being able to read anymore because your eyes glaze over and your head spins even though it has only been two pages. It’s going from star college student in graduate French classes to struggling to finish work from a semester ago because you can’t read, write or think straight and the anxiety is too crippling.
It’s feeling like a disappointment and watching your life plans go up in flames. It’s being overly medicated and misunderstood. It’s sleeping because it’s the only place where the depression can’t find you. It’s forgetting to eat and having heart palpitations because of the medication and shaking so much that you drop the groceries because you’re too weak.
It’s staying up until 5 am because that’s the only time you have energy only to feel nauseous for the next three days. It’s going from being fluent in multiple languages to barely being able to process English. It’s being vulnerable and afraid to leave your house for fear of falling asleep while driving or in public and being an easy target for G-d knows whom. It’s being told that you’re just lazy or need to go to bed earlier or that it could be worse.
It’s suffering alone. It’s watching your professor realize that you can no longer understand the words coming out of his mouth and that he has to slow down even though it’s shameful and humiliating. It’s giving up an honors thesis (maybe) after three years of planning. It's falling in the shower. It’s having nightmares so vivid that you wake up crying with your heart racing and your body across the room. It’s missing out on the best things in life and watching everyone forget you. It’s wondering if your dreams are unattainable and grieving the loss of who you thought you’d be.
But most of all, it’s being an invisible illness warrior. And it is not a joke. #WorldNarcolepsyDay
Did you know you can read advice and stories from other community members in our new Community Hub?