Sleepy

"You are so lucky, what I wouldn't do to be able to sleep like that!"

Lucky. People call me lucky all the time for my sleep habits. Lucky that I can fall asleep on a plane, lucky that I can fall asleep quickly, lucky that I don't have insomnia. I think the insomnia one is my favorite. People are widely aware of this sleep disorder and often use the term colloquially, but very few people are aware of its antithesis: hypersomnia.

Insomniacs have issues falling asleep while hypersomniacs have issues staying awake. It is not as much fun as it sounds. One might have visions of resting in bed, sleeping in a cozy space, warm and happy, but the reality is very different and sadly more bleak.

If you'll indulge me for a moment, imagine stepping off of an airplane, finally in your hometown after two days of traveling, four layovers (one of them delayed) and many timezone crossings. You are exhausted and jet-lagged, but you're home. Call for a taxi, swipe for an Uber, either way you are almost back to your bed to satisfy that all-consuming craving you have for sleep. But in that moment as you wait for your ride, your boss calls you and tells you that you have to be at work asap, it is urgent, and your job is at risk if you no-show. And for a moment, just a moment, you wonder if losing your job would be worth it to simply go home and sleep.

This is what living with idiopathic hypersomnia is like for me every single morning.

But probably the *best* part about idiopathic hypersomnia is that no matter the quantity of sleep, the quality is always lacking. Sleep never lives up to the hype. It is like buying a brand new Mercedes and having a wind-up kids toy delivered to your house and you are left wondering "what the heck went wrong with this transaction?". If left on my own, no alarms, no work or classes, I can sleep for ~20 hours a day. But I can also wake up after all of those hours just as tired as when I went to sleep.

Sleep is my game of high stakes chance - win and you get to be functional for a day! Lose, and you get to fall asleep on the cold, hard hallway floor of your apartment while trying to come back from the bathroom after your alarm went off 42 times over the last hour and a half and you feel numb inside. Welcome to chronic disorder gambling, we hope you have fun!

Yes, I joke about it. I have to make light of it somehow because if I don't it winds up being incredibly depressing. And no, this is not depression, although most people with hypersomnia have had a brush with one or two doctors that would like to make that misdiagnosis. I have a love for life. I have friends and family that I am excited to see, I want to engage with people, and I strive for academic successes and a fulfilling career. For the most part I am able to achieve all of that. I attend my classes faithfully and maintain a 4.0 GPA in graduate school, and yes, I am proud of myself. But these successes can also set expectations too high, both in my own mind and in the way others see me.

Sleep disorders are very commonly misunderstood. Not just by average people but by doctors and sleep specialists too. The truth of the matter is that people still don't know too much about sleep in a medical sense. This also means that treatment options are limited and frustration runs high in sleep disorder sufferers. Most of us have been through more than half of the alphabet soup that is medical testing: MRIs, CTs, PSGs, MSLTs, EEGs, EKGs. For many people it took one or more misdiagnoses first before the origins of our sleepiness was revealed.

This is not a piece on the detriments of the American medical system (that one would turn into a 6 book series I'm sure), nor it is a piece that I have written to seek out pity for my condition. I simply believe that when things are misunderstood, the best thing people can do is talk about them openly. This is something I am trying to get better at in my personal life because I have tried to hide this part of myself for so long.

When my symptoms started I began to think that somehow I had gotten lazy, that maybe college was too much for me, or worse yet that I just didn't care about my future anymore. This could not be farther from the truth. Once a real medical diagnosis was proffered as an explaination for my many, varried, strange symptoms, my understanding of myself changed for the better. I recognized that while this is a neurologic limitation I possess, there are still so many ways to enjoy the world, and that I still have the power to earn the degrees that I need. I found I am strong in internal ways that most people will never get to see.

A diagnosis of idiopathic hypersomnia isn't all sunshine and roses and self-discovery. I fall into the invisible illness "but you don't look sick" category. I don't begrudge any of the people who have told me that all I need to do to feel better is sleep more, excercise more, drink more water, sit in the sun longer, etc. I appreciated that they cared enough to want to help. I share my story now with the hopes that people will find it interesting or that it could potentially help someone else in their sleep disorder journey.

So lovely reader, if you've made it to the end of my Tale of Snooze, I wish you a lifetime of fulfilling sleeps - that is the greatest magical gift of which I could ever dream.