I guess my story is a lot like other people’s stories. . .or at least I hope it’s a lot like theirs.
My symptoms started when I was about 14 years old. Actually, except for my early childhood, I don’t really remember being awake a lot. In school, I basically slept every day, and some of my teachers started to worry about me, but I was one of the best students in school, so, after a while, my teachers just accepted my sleepiness.
All teenagers sleep a lot, so my mom wasn’t too worried. I went to see many doctors over the years. They checked me, but it was nothing serious, so they told me not to worry. My father died when I was 15, so a lot of doctors thought that I was just depressed. Once I told them about my loss, they would stop taking my sleep issues seriously and try to send me to therapy. So, I just stopped telling them about my sleepiness because I always knew it was something else. It wasn’t that I didn’t want to get up or stay awake. I didn’t want to stay in bed all day. I just could not do it.
One of my first memories about having issues with IH happened when I was 16. I was on a weekend trip to Rome with my boyfriend. I couldn’t accept that I needed to sleep all the time. . . that I couldn’t get up before 11 and that we had to go back to the hostel every few hours to take naps. We fought a lot, and I realized that I needed to do something.
I went to see a neurologist. I owe that man a lot. He was the first one to take me seriously. He never told me that it was normal for a teenager to sleep a lot, like the other doctors had. He knew that there was something wrong with me and arranged an appointment for me with Prof. Dr. Mayer at the Hephata Clinic in Schwalmstadt-Treysa, Germany. Prof. Dr. Mayer is one of the best doctors I’ve ever met. I spent a week in his clinic and did countless tests. At the end, I was diagnosed with IH. And, like most of people with IH, I finally felt free. My problem had a name. There is no cure, but just knowing that it wasn’t in my head, helped me a lot. He encouraged me to share my feelings and struggles with my friends and family. He was the first one to give me modafinil. I reacted (and still do react) very well to modafinil. I found a way to take as little as possible, but as much as I need. But I’m still struggling with my disorder every day.
I think the biggest problem for people with IH is the lack of acceptance in our society. In high school, my friends laughed about me when I was sleeping. They took photos of me sleeping in class, in a club, or even in the Sistine chapel in Rome. I never had a problem with that. It was their way of accepting me, as they never expected me to be awake, or pressured me in any way. If I told them I was tired, they accepted it and helped me.
After graduation from high school, I traveled in Asia and America for six months. It was a great time, primarily because I was traveling on my own and on my own schedule. I was able to sleep. Nobody told me to get up if I was sleeping for 18 hours straight. And I didn’t have to get up because there was nothing for me to do besides relax and travel.
In 2013, I moved to another city to begin attending university. The first problem was finding a doctor who understood my disorder. I went to a lot of doctors, but they all had to Google my symptoms and told me I was very “interesting.” I still see a doctor, but I have to tell her my doses for my drugs and which tests she needs to do. I started looking for support groups, online chats, anything. I couldn’t find anything in Germany that helped me.
My roommates started to be suspicious. They told me it was “weird” that sometimes I can and sometimes I can’t get up. They complained about my really loud alarm clock. I told them that even with the alarm clock, I can’t get up sometimes. People started telling me I was lazy because I couldn’t go to class on bad days. They told me I was never going to be able to finish school. Because I continue to have good grades, I am not too worried about that part, but I know that I’m never going to be able to work 8 hours a day.
My friends here think I’m lazy. Every time I try to tell them how much it hurts, they tell me that they’re sorry. But it’s not changing. I have the same problem with my mom. She really tries to accept my disorder, but it’s hard for her. She sometimes get’s really angry at me, if I can’t get up. Before I was diagnosed, I thought I was a lazy person. But I’m not. None of us is. But a lot of people don’t get that. I am not lazy. I just can’t help myself. It’s hard to explain to people how you feel with IH. Everybody thinks, “Well, I’m also very sleepy a lot. Get over it. I know what it feels like.” You don’t know what it feels like to always be sleepy—to wish, that you could be awake, just for a week, or a day—because you can’t remember what it’s like to be awake.
People look at you, and judge you. And if you try to explain yourself, they don’t listen. For me, that’s my daily struggle—not the sleepiness, but dealing with other people. And even the people who want to understand, don’t really understand. Like my mother—sometimes I wish I were better at explaining myself. But how do you tell a healthy person how IH feels? I think this is a question everyone with IH asks themselves at one point.
Sometimes I’m sad and I don’t feel as if anyone is listening. I turn on my computer and go to a website like this one. And I know that I’m not alone. And that it’s not just in my head. And I read other people’s stories and I feel better. Because I know that we understand each other.
None of us is alone. And I’m never going to give up. I’m always going to try to make people understand and to accept our disorder. That’s the most important thing for me.