In this Personal Journey story, a 19-year-old woman shares how it really feels to have IH. Her feelings run the gamut – from frustration to anger to fear to depression to sorrow. Even with a diagnosis of IH, she still feels the need to apologize for being lazy (and worries that her diagnosis is not real). But she is determined not to let her illness take away her dreams.
Sorry for being sleepy. I didn’t mean it.
I was 15 years old when I was sent to the intensive care unit. There was the suspicion I took an overdose because I seemed super sleepy and couldn’t keep myself awake. I’ve always been a person who loved to sleep as long as possible and delayed getting out of bed in the morning, but the symptoms soon began getting worse. Looking back, I think that was the beginning of my hypersomnia. There was a time when I didn’t attend school because, for weeks, I slept about 20 hours a day. Two years later I got the diagnosis of idiopathic hypersomnia.
I fell asleep in the most curious places, not only in class, but while going shopping, eating (face meets lunch), at IKEA (there were just too many beds!) and even at a museum. I fell asleep on a train and woke up in a foreign place. I couldn’t stay awake in the shower and only got up because my face was half-underwater and I had to cough. I woke up at the hospital several times because teachers or people on the street, who didn’t know this was normal for me, couldn’t wake me up and called the ambulance. Once the police thought I was a drug addict because I was unresponsive.
Sometimes, my desire to sleep is more important to me than my life. (I could die if I’m sleeping out here in the cold. I could drown if I’m falling asleep in the shower now. But I need to sleep. I don’t care if I die.) I also overslept my final exams at school. Fortunately, I could retake them.
The biggest challenge about my hypersomnia is that my sleepy self is dependent, and that makes me furious. I need someone who wakes me up every morning, several times, because I sleep through all of my alarm clocks, and even if I seem awake or seem like I’m getting out of bed, I’ll take the first chance to continue sleeping – sometimes actually on the bath mat when my room is locked, in the hope I’ll stay awake if I don’t have access to a bed. When someone tries to awaken me, I often freak out, screaming things such as “I’M AWAKE, I’M AWAKE, I’M AWAKE! GET OUT OF MY ROOM!” Later, I can’t remember that I was getting upset or that I was already getting up six times before falling asleep again. I’m sick of screaming at people without remembering what I did. I know it doesn’t seem like that, but wholeheartedly, I am very sorry. I just feel powerless to change that, which isn’t an excuse but makes it even worse.
Even if I have the diagnosis, I still feel lazy, taking up too much space, thinking I’m just making it up in my mind. Because I’m scared I do, and it is just part of an avoidance strategy that my depression uses almost every day. It is often quite hard for me to stay in my daily structure – which I must confess – really helps me get through the day.
I am now 19 years old. My biggest dream is becoming a director and I won’t let my illness take that away from me.
I don’t want to sleep my life away.
But obviously, I often do.
– L.F., Germany