Imagine that you’ve just pulled an all-nighter studying for exams. Your brain is tired. Your eyes are tired, You can barely function. You stumble to class and feign alertness until they end at 3:00pm. But wait! Your day still isn’t over.
You can’t sleep yet; you still need to do homework and get groceries. Your stomach rumbles, so you drive to the grocery store in your exhausted, dizzy, inattentive state. You walk into the store and can’t remember why you came in the first place. You decide to buy a couple frozen meals and drive back to your apartment.
By now you’re so exhausted that you’re hallucinating, seeing strange lights and shapes out of the corner of your eye. You pop a frozen meal into the microwave and finally recline on your roommate’s tiny, uncomfortable couch and close your eyes for a blissful second. You close your eyes at 6:00pm on Wednesday. You wake up, groggy and un-refreshed, at 4:00pm on Thursday.
You’ve just slept for 22 hours.
Now imagine that instead of having pulled off that all-nighter, you instead got 14 hours of sleep the night before but feel as exhausted as if you hadn’t slept at all.
This is my daily life living with idiopathic hypersomnia.
Like many college students, I’ve experienced my fair share of sleepless all-nighters, choosing afternoon naps over doing homework, and sleeping until noon on weekends. I’ve fallen asleep in class, canceled plans with friends at the last minute so I could sleep, and expressed friendly envy towards a classmate who got 10 hours of sleep the previous night.
Unlike most college students, my afternoon naps ranged from 6 to 18 hours. Pulling the rare all-nighter resulted in me falling asleep the following afternoon and sleeping until the following day. Sleeping in on weekends meant that you didn’t wake up sometime after 12:00 pm; I usually woke up sometime after 8:00 pm.
I thought all of these behaviors were normal for a college student, especially one who stays up a little later than she should and struggles to manage her time effectively. Little did I know that all of these were red flags for a sleep disorder.
I had always struggled to do well in college. I procrastinated a little too often on homework assignments and didn’t study quite enough for tests. I routinely slept through my alarms and sometimes slept through my classes altogether.
My grades ranged from just ok to pretty good and my class attendance was always fairly poor. I just assumed that I wasn’t managing my time well and that I was at fault for choosing sleep over my other responsibilities.
Even after failing a class and losing my job from poor attendance, I still thought that there was nothing “technically” wrong with me. I thought that everyone I talked to about my sleep was right: “you just need to push through it,” “go to bed earlier,” and most of all “stop being so lazy.”
It wasn’t until January 2015 that I realized something was wrong with me and had been wrong with me for a long time. After sorority chapter, I stumbled back to my apartment ready to go straight to bed at only 8:00pm.
I remember pushing my clean laundry off my bed onto the floor and deciding that it took too much effort to change out of my formal sorority dress into pajamas. I laid out horizontally across my bed, with no pillows and no blankets, and…that’s all I can remember. Until I woke up at 10:00pm the following day.
I remember waking up, still dressed from the night before, with no recollection of what had happened or what time it was. I grabbed my phone and gasped when I saw that it was 10:00pm on Tuesday. That couldn’t be right. Our chapter was on Monday nights at 7:00 pm and I was home by 8:00 pm. That would mean that I slept for over 24 hours. How could that be right?
Normal people don’t sleep that long.
I was absolutely terrified. I couldn’t begin guessing what was wrong with me; what would make me sleep for that long? I wasn’t ill. I hadn’t had a recent allergic reaction. I wasn’t on any medication. What was it? And most of all I feared: what if I fell asleep somewhere that wasn’t safe?
I called my doctor and scheduled an appointment for the next day. I was immediately referred to a sleep study to see why I was sleeping for so long and why I struggled to wake up in the mornings. Leading up to the sleep study, I feared going to sleep every single night. I feared that I wouldn’t be able to wake up the next morning, or even wake up at all the next day.
I immediately started a healthy sleep regime: I was in bed with the lights out by 10:00 pm and my first alarm was set to go off at 7:30 am. I honestly believed that adopting this strategy would be the key to managing my sleep effectively and that there was nothing medically wrong with me.
However, after a month of living on this sleep schedule, I only felt worse and continued to sleep longer and longer every night.
I completed my sleep study and two weeks later, I was diagnosed with idiopathic hypersomnia. Unlike insomnia, hypersomnia means sleeping too much, especially when the person struggles to wake up after sleeping. Idiopathic means “unknown cause.”
I was disheartened and felt more alone than ever to learn that I had a sleep disorder that prevented me from waking up naturally, and that even the name itself stated that no one knew how it was caused.
I was given a prescription for a stimulant medication used to treat narcolepsy but was denied insurance coverage for it because I didn’t have narcolepsy. And at $200 a bottle, it was impossible to pay for it out of pocket.
I felt hopeless. My performance in class worsened until I was finally forced to withdraw from my last semester of senior year.
I signed up for summer classes to complete my degree, but even then I continued to struggle to wake up and go to class everyday. Homework was nearly impossible; I fell asleep during all my assigned readings and even during assigned video viewings.
There was nothing that kept me awake. I felt that I was condemned to a life of unconsciousness, and it was a life that I struggled with alone.
My mom started searching to learn more about idiopathic hypersomnia. She managed to get me an appointment with the world’s leading neurologist on the disorder in only a month instead of the typical 12 month waiting period, which was a feat we agreed was a miracle from God.
I saw him and learned more about the causes of idiopathic hypersomnia, and I learned that I was one of hundreds of patients he was treating for this disorder. He said that hypersomnia was caused by the brain producing a chemical that acts like a sleeping pill, and that no matter how long I slept, this would only make me crave more sleep.
He recommended that I also attend the annual Hypersomnia Foundation conference during the summer. I was relieved that not only I was seeing a doctor who understood why I was so sleepy and understood my struggles but also that there was an entire conference for other people who suffered from the same disorder.
For the first time since that night in January, I was finally relieved and happy. I was no longer alone.
I attended the conference and was surprised by how many people were there. There were over 300 people in attendance, and most of them suffered from hypersomnia. I listened to the world’s leading researchers talk about their newest discoveries and about new treatment methods they were developing for hypersomniacs.
I couldn’t believe it; I finally understood the disorder that had caused me so much suffering and that there were even treatment options available. I wasn’t condemned to a life of unconscious sleep; I would be able to live a normal life and stay awake every day.
I met several other young adults in a breakout session support group. Hearing their stories about their struggles and their diagnoses made me relieved that there were other people who understood everything I was going through. We bonded over our shared mental illness and created an amazing support group that we’ve continued ever since the conference.
We share advice on dealing with our disorder, console and help each other during challenging times in our lives, and find ways to laugh about our disorder on a daily basis (our favorite joke is “I’m great in bed. I can sleep for days”).
Living with idiopathic hypersomnia is a daily challenge. I’m challenged from the moment I wake up every morning until the moment I go to bed to stay awake and try to live a normal life. But now I know, even in the face of a rare illness like this, I’m not the only one going through it.
There are always other people who are there going through the exact situation I’m experiencing, and together we can help each other overcome the daily struggles we all face.
I’ve been told many times by other people that “I’m not the only one experiencing this,” but I’ve always brushed that off thinking that they didn’t understand my unique situation. But they were right: even with a disorder that’s only found in 1 out of every 2,000 people, I am still not alone.
I have my family and my friends supporting me. I have my doctors for continuing treatment. I have my fellow patients for advice. And I have God to lean on and guide me through this difficult time in my life.
If you only remember one thing from my story, I want it to be this: no matter how hard life gets, no matter how hopeless you feel or the failures you endure, you are never ever alone. You are not the only one experiencing this difficulty in your life, and you are not the only one who has ever suffered from this situation or felt alone like this. You are loved by your family, your friends, and your deity, and you WILL overcome this difficult time in your life.
Take it from Sleeping Beauty herself.
(If you’re interested in learning more about idiopathic hypersomnia, visit the Hypersomnia Foundation’s website at www.hypersomniafoundation.org).