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LIVING WITH IDIOPATHIC HYPERSOMNIA
Having a rare neurological sleep disorder like Idiopathic Hypersomnia usually means going through life never meeting another person you can relate to or who understands what life is like for you. This can be very isolating and lonely.
Our Living with IH page is a place where you will find stories and other expressions by people living with Idiopathic Hypersomnia. We hope that their stories will help you on your journey.
Click on the images above and below to read about these awesome people living with Idiopathic Hypersomnia!
Understanding how chronic illness affects someone is difficult for anyone that doesn't experience it. We want to do our best to show people what living with IH is like through the thoughts and stories of people living with Idiopathic Hypersomnia. These posters are quotes either from stories that have been shared with us or from our conversations with people living with Idiopathic Hypersomnia. Please share them.
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.
Read more here:
"My diagnosis has helped me have some understanding of my symptoms and helps me feel less abnormal or weird". However, my diagnosis has not changed my experience or how idiopathic hypersomnia affects me. My medication allows for a little respite from my excessive sleepiness but it does not keep me from struggling to stay awake every day, it does not stop my memory problems or my experience of brain fog (which leaves me unable to speak coherently and stay focused), it does not stop my body from shutting down at night resulting in the inability to walk to bed or the sleep drunkenness I experience in the morning as my brain fights against me for more sleep". Click here to read more from Toni
"I get it; we’ve all felt tired. But I have never felt awake. Before my diagnosis, I was drowning. I was 50 feet underwater and no matter how hard I kicked I couldn’t burst through the waves to the surface. Most days now, I’m bobbing in the surf. Waves knock me down constantly. Salt water overwhelms me. But at least I can breathe. Every now and then, it gets bad, and I slip back beneath the waves of tiredness. This is my reality. This is every day". Click here to read more from Megan
"One day I had a rare neurological disorder named Idiopathic Hypersomnia and the next it appeared I did not. How did this happen? Let me explain…" Click here to read more from Heather
"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.
"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
We feel bad enough about what we can’t achieve and what we miss out on.
"...imagine what it is like for someone who suffers from a chronic disorder that for many means NO amount of sleep guarantees they will get their “spoons” back. This is what living with Idiopathic Hypersomnia is like for most of us... The spoon theory for people with Idiopathic Hypersomnia can mean that they may never know how many spoons they are going to have from one day to the next because sleeping does not give us back a new supply of spoons. On top of this the medication we are prescribed doesn't treat the cause and it often makes the symptoms worse so it doesn't guarantee a new set of spoons either... So the next time you have an opinion about someone with Idiopathic Hypersomnia or some words of advice please remember these key points: Click here to read more
"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
Tired, sleepy, exhausted? Do you see a difference between these states?
“To the Idiopathic Hypersomnia (IH) sufferer I find myself to be, there are distinct differences between these words that are often used interchangeably by others. I think perhaps the various meanings of these are so distinct to me because I live my life in a perpetual balance of the three….” Click here to read more from Isabel Menssink
At 27 years old Jane was diagnosed with Idiopathic Hypersomnia.
“A sleep disorder that helped me make sense of myself.” Click here to read Jane's story
Don’t you think I wish I could?
You wouldn't ask a deaf person why they can't hear or tell them it's their fault for not listening properly…
So, don't tell me I could stay awake if I really wanted to because you can, so why can't I?
If you would like to share your personal story or other patient perspective on our website send it to firstname.lastname@example.org
All expressions will be published anonymously unless you specifically request to have your name added to your work.
We are interested in all forms of expression, from written to visually creative work so if you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience with Idiopathic Hypersomnia we would love to share it.