Updated: Jul 24, 2019
Understanding how a chronic illness affects someone is difficult for anyone that doesn't experience it so for the 2018 Idiopathic Hypersomnia Awareness Week® we wanted to do our best to show people what living with IH is like through the thoughts and stories of people living with Idiopathic Hypersomnia. Idiopathic Hypersomnia tired is not normal people tired. "To start with when normal people are tired it’s generally because they are sleep deprived or their sleep quality isn’t good. IH tired is sleepy, we are sleepy DESPITE having lots of good quality sleep. We can’t turn our sleep switch off. With normal people, they are tired because they either can’t or don’t allow their sleep switch to turn on. That’s a huge difference – one I wish people would understand." Click here to read more from Shelly I don’t ever remember a time when I woke up feeling refreshed. I’m still reluctant to share my diagnosis with family and friends. I feel the effort to explain the illness is too difficult and “It’s kind of like Narcolepsy” just doesn’t cut it. I guess I still feel that I'll just be judged as being lazy. Click here to read more from Teresa. I have been battling Idiopathic Hypersomnia (IH) in increasing degrees all my life. "It has been a long time. As every decade passes, I can't believe I've made it. I also can't believe that there are still no answers on the horizon or true public or general medical knowledge. It still carries many misconceptions and judgments." Click here to read more from Denise I am grateful to finally know that I’m not mad, or losing my mind, and that I don’t imagine how sleepy and exhausted I feel. "Knowing that there is a legitimate medical reason for the way I feel has given me permission to stop when things are getting too much. On the other hand, I hate having to take medication every day. I hate that there is something “wrong” with me that I will never fully understand. I hate the thought of never meeting another person who feels like I do. I hate hearing people that do not have IH say “I know what it’s like to be tired”. I wish I could find the words to explain the constant battle that happens in my mind several times a day between “I’m so exhausted I just want to sleep” and “I don’t want sleep to take over my life”. Click here to read more from Kelly One of my biggest struggles is my inability to wake up on my own."I am a very independent person, and I always have been. I'm headstrong and a "go-getter". However, for the past 12 years or more, I have had to have someone else to wake me every morning." Click here to read more from Laura Living with Idiopathic Hypersomnia is lonely. "It’s hard to make and keep friends when people think you’re not interested in them or what they’re saying. But it’s not true - I am interested. I just have difficulty concentrating on what’s being said and following the story. I’d love to go to a party, a concert or even the movies with friends but I can’t drive far for fear of falling asleep at the wheel. Not only that, but I’ll fall asleep during the event anyway and there’s nothing I can do to stop it." Click here to read more from Robyn I am not my sleep disorder, idiopathic Hypersomnia While job-shadowing in Slovenia this past summer, I acquired the nickname “Panča.” This Slovenian word is an affectionate term for a sleepy baby or small child, and I earned this moniker by repeatedly falling asleep during meetings, car rides, and lunch breaks. Click here to read more from Claire The posters in the slideshow below are quotes either from these stories or from our conversations with people living with Idiopathic Hypersomnia. Please share them. You will also find a copy of them on our Patient Perspectives page. We would like to acknowledge the generosity of Steve Johnson. It is his artwork that is behind our “thoughts from people with Idiopathic Hypersomnia” posters. Wading through life in a sleepy haze can sometimes feel like you are looking at the world through an abstract lens so we think Steve’s abstract art is a great choice for the backdrop of these quotes. You can check out Steve’s art here.
You can read other "Patient Perspectives" here