LIVING WITH IDIOPATHIC HYPERSOMNIA
This first picture is of me out on the town with my girlfriends last year for my birthday.
The second picture is of me during my sleep test three years ago. Besides all the wires and tape, this is what I look like 90% of the time: in my pjs, no makeup, and absolutely exhausted.
I suffer from a neurological sleep disorder known as Idiopathic Hypersomnia. There is no known cause. There is no medication specifically for IH. And there’s no known cure.
At 25 years old, I’m stuck to my bed most of the day every single day. No matter how much I sleep, I never wake up feeling refreshed. People with IH can sleep hours upon hours, but we don’t get restorative, restful sleep. Therefore, we are constantly exhausted, struggling to overcome the main symptom of IH, sleep drunkenness, which is where we might be conscious but are not fully coherent. Hence the term.
So, what’s the difference between your tired and my tired (because we all experience sleepiness)?
The difference is that while you can take a nap or go to bed early, and you’ll wake up feeling better, I can do those exact same things and still wake up feeling the same or even more exhausted than I was. The sleepiness never subsides or improves.
On top of this, I’ve found people to be mostly compassionate and supportive with a willingness to learn about my other chronic illnesses. However, and I’ll never understand why, my experience with support for my sleep disorder is drastically different from my experience in regard to my other disorders.
“Can’t you just try going to bed earlier?”
“You need to get off your phone. You need to stop playing video games.” (I don’t even play video games, by the way )
“Have you tried CBD? It helps me!”
“Oh yeah. I’m exhausted all the time too.”
“What’s IH?” (After I’ve already explained it a million times)
There’s just this massive stigma towards those who are tired. I’m looked at as if my exhaustion is just a matter of will power or a lack of motivation. Do you think I WANT to be asleep all day? What I would give to have a career, my own place, a boyfriend, a normal life where I go to sleep and wake up actually feeling awake. You have no idea what I’d give to wake up every day and be able to get up and function like I used to.
Additionally, not only is IH practically unheard of, but did you know medical students receive an average of 30 minutes on sleep education while in medical school? Something that takes up 1/3 of our lives is so under researched and misunderstood. No wonder there’s no known cause for IH, let alone a cure!
I can’t begin to explain how many tears I’ve cried because this is my life. I can’t even tell you that I’m watching my life go by because I’m too busy sleeping. While treatment for IH is similar to that of narcolepsy, because there’s no known cause for IH, there are also no medications out there specifically for IH. This makes getting medications incredibly difficult. Also, the medications used, which are usually stimulants or medications similar to stimulants, usually lose their effectiveness over time or cause such horrible side effects, you don’t even want to see the pill ever again. On top of that, I shouldn’t be told at 25 that this is just the way it is. That there just aren’t a lot of treatment options.
You know what? This shouldn’t be the way it is. This shouldn’t be something I have to deal with. I shouldn’t want to scream out to the world, “PLEASE NOTICE AND CARE ABOUT ME!” Doctors should care. Medical students should be educated on sleep disorders and be encouraged to get into sleep medicine. And the world should know about IH and how hard it is to live with it. Maybe then we could be one step closer, even if it’s a tiny one, to understanding more about IH and helping sufferers to have a more fulfilling life.
The first full week in September is the worldwide Idiopathic Hypersomnia Awareness Week. I encourage you to research IH and to talk to your family and friends about it. I also encourage you during those discussions to emphasize that this isn’t something that can be controlled like a light switch; IH can’t be turned on and off. And whenever you wake up absolutely tired with no idea how you’re going to get through the day, I hope you think of me and remember that this is what it’s like to live with IH every single day.