What Living With Idiopathic Hypersomnia Is Really Like

What Living With Idiopathic Hypersomnia Is Really Like

(I Fell Asleep While Writing This)
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Sleep is my drug; I can’t live without it, I can’t get enough of it, and I crave it every second of every day. To the average person, I might just sound like your typical sleep-deprived college student surviving off of very little shut-eye and numerous shots of espresso. How can sleeping too much be a medical issue? Many times I have been reminded how “blessed” I am that I have no problems falling asleep or staying asleep. Sure, I’m not saying I don’t enjoy dozing off moments after my head hits the pillow, but sometimes I want to be able to fully experience the world beyond the dreams that conspire in my mind. How can I live when all my brain and my body want is to sleep?

It’s called Idiopathic Hypersomnia. I’m guessing you haven’t heard of it, and I don’t blame you for not knowing about such a rare disorder. Everyone seems to know what insomnia is, so when asked what my disorder means, I usually refer to it as the opposite of insomnia; instead of sleeping too little, I sleep too much. Idiopathic Hypersomnia (IH) is commonly defined as excessive daytime sleepiness. My brain is constantly telling me to sleep, but even after hours and hours of resting, I often feel more tired than I did before. On rare occasions, I will feel completely awake, and it is the most amazing feeling ever, something that the average person might take for granted.

Even though my symptoms were not fully apparent until my teenage years, I have always been a tired person. When I was a baby, my mom couldn’t even breastfeed me because I would fall asleep before she got the chance. Once I got older, my tiredness was easily mistaken for laziness, which is ironic because people with IH are the least lazy people that I know. We want so desperately to be able to do what everyone else does, but often times, we just physically and mentally are not capable of keeping up with the busy day-to-day life. I did not find out that I had IH until I had a sleep study done the middle of my senior year of high school. Before that time, my family, friends, and teachers didn’t understand why I would cancel plans, turn in homework late, or sleep all afternoon and still all through the night. Receiving a diagnosis was one of the best moments of my life. Some people might not understand why that is, but for me it was an answer to my problems, and in some ways, it was a solution as well.

Now that I have been diagnosed, I have been on a stimulant called Modafinil. Although it often takes away my appetite, for the most part, it does a decent job of keeping me awake. However, mornings are still the absolute worst. I love mornings, but I often miss them because I can’t will myself out of my bed. Because of this, I requested that my school let me sign up for classes early in order to ensure that I didn’t have any early morning classes. I don’t know if my school didn’t understand the depths of my disorder because they had never heard of it, but I was not welcomed with understanding. In fact, I was told that there was only so much that could be done for me without risking me jeopardizing the system. Well, if you have ever been in college, I’m sure you know that the system is already pretty messed up, but this was just another situation where I felt misunderstood and hopeless.

Sleepy is not a synonym for lazy. I often imagine my life without idiopathic hypersomnia. I think of all the things that I could accomplish, all the challenges that I wouldn’t have to face, and all the mornings that I would be awake for. After I am done feeling sorry for myself, I move on to think about all the things I have accomplished, all the lessons I have learned, and all the relationships I have built not only despite of IH, but also because of IH. All I ask for is understanding. I’m not making excuses, and I’m not being lazy, but I am still trying to just figure this all out. It might take a few (or a lot) of naps along the way, but someday, I hope to get my mornings back.



If you would like to know more about IH, visit hypersomniafoundation.org

Cover Image Credit: Grace Vaughn

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To The Person Who Feels Suicidal But Doesn't Want To Die

Suicidal thoughts are not black and white.
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Everyone assumes that if you have suicidal thoughts that means you want to die.

Suicidal thoughts are thought of in such black and white terms. Either you have suicidal thoughts and you want to die, or you don't have suicidal thoughts and you want to live. What most people don't understand is there are some stuck in the gray area of those two statements, I for one am one of them.

I've had suicidal thoughts since I was a kid.

My first recollection of it was when I came home after school one day and got in trouble; and while I was just sitting in the dining room I kept thinking, “I wonder what it would be like to take a knife from the kitchen and just shove it into my stomach." I didn't want to die, or even hurt myself for that matter. But those thoughts haven't stopped since.

I've thought about going into the bathroom and taking every single pill I could find and just drifting to sleep and never waking back up, I've thought about hurting myself to take the pain away, just a few days ago on my way to work I thought about driving my car straight into a tree. But I didn't. Why? Because even though that urge was so strong, I didn't want to die. I still don't, I don't want my life to end.

I don't think I've ever told anyone about these feelings. I don't want others to worry because the first thing anyone thinks when you tell them you have thoughts about hurting or killing yourself is that you're absolutely going to do it and they begin to panic. Yes, I have suicidal thoughts, but I don't want to die.

It's a confusing feeling, it's a scary feeling.

When the depression takes over you feel like you aren't in control. It's like you're drowning.

Every bad memory, every single thing that hurt you, every bad thing you've ever done comes back and grabs you by the ankle and drags you back under the water just as you're about the reach the surface. It's suffocating and not being able to do anything about it.

The hardest part is you never know when these thoughts are going to come. Some days you're just so happy and can't believe how good your life is, and the very next day you could be alone in a dark room unable to see because of the tears welling up in your eyes and thinking you'd be better off dead. You feel alone, you feel like a burden to everyone around you, you feel like the world would be better off without you. I wish it was something I could just turn off but I can't, no matter how hard I try.

These feelings come in waves.

It feels like you're swimming and the sun is shining and you're having a great time, until a wave comes and sucks you under into the darkness of the water. No matter how hard you try to reach the surface again a new wave comes and hits you back under again, and again, and again.

And then it just stops.

But you never know when the next wave is going to come. You never know when you're going to be sucked back under.

I always wondered if I was the only one like this.

It didn't make any sense to me, how did I think about suicide so often but not want to die? But I was thinking about it in black and white, I thought I wasn't allowed to have those feelings since I wasn't going to act on them. But then I read articles much like this one and I realized I'm not the only one. Suicidal thoughts aren't black and white, and my feelings are valid.

To everyone who feels this way, you aren't alone.

I thought I was for the longest time, I thought I was the only one who felt this way and I didn't understand how I could feel this way. But please, I implore you to talk to someone, anyone, about the way you're feeling; whether it be a family member, significant other, a friend, a therapist.

My biggest mistake all these years was never telling anyone how I feel in fear that they would either brush me off because “who could be suicidal but not want to die," or panic and try to commit me to a hospital or something. Writing this article has been the greatest feeling of relief I've felt in a long time, talking about it helps. I know it's scary to tell people how you're feeling, but you're not alone and you don't have to go through this alone.

Suicidal thoughts aren't black and white, your feelings are valid, and there are people here for you, you are not alone.

If you're thinking about hurting yourself please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit suicidepreventionhotline.org to live chat with someone. Help it out there and you are not alone.


Cover Image Credit: BengaliClicker

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Freshman Year Of College Taught Me Important Lessons That I'll Never Forget

What people don't tell you about your first year of college.

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Everyone looks forward to the day he or she walks across a stage and receives a high school diploma. The unlimited possibilities that college will hold for you and the new people you will meet are exciting. Going into college, I didn't know what to expect. I had heard stories on how to make friends, what to do to maintain a social and academic life, and how to not allow the new environment to overwhelm me. However, this did not make my transition into college any easier.

I believe the most important thing l learned that no one told me was the fact that not everyone is going to have the same heart as you, and that's okay. There will be people who will make you question if you made the right decision or if you are doing something wrong. I transitioned from being surrounded by people who had similar qualities as me to people surrounded by people who could not be more different. That is part of the college experience.

Everyone comes from somewhere different and think and act in various ways. College has made me more open to different ideas and allowed me to realize that not everyone will always be kind to you. How other people treat you is not always a reflection of how you treat them. College has taught me to let the little things that bother me go because there is no point to waste time on something that is not going to impact you in a positive manner.

The next lesson I've learned since I started college is that it's okay to be alone; it's even okay to want to be alone. One of the things stressed to me before I started college was to put myself out there and do everything I can do to meet new people. Which I did, and am so glad because I have met some people who I couldn't live without now.

However, that does not mean I never want alone time. For me, I have noticed that in order to focus on myself mentally I need a day or two away from all the commotion that is college. Being alone helps me clear my head and focus on what I need to do in order to be my bests self. I came to the conclusion that being alone and being lonely are two entirely different things, something I did not realize in high school.

Overall, the first semester of college helped me understand myself more. I know that in order to succeed you need to make yourself happy first, not anyone else. No matter how important they are to you. College is a tough transition for anyone, no matter how prepared you think you are. And by putting your needs first, it makes the transition a little easier.

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