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.
For information on our Living with Idiopathic Hypersomnia Community Groups click here
Share this page to help others understand what living with Idiopathic Hypersomnia is like.
Click on the images 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 with the hashtag #LivingwithIH
We asked people living with idiopathic hypersomnia what they wish people knew about IH. These are some of their responses.
There are more awareness images you can share on the
Idiopathic Hypersomnia Awareness Week page
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'A mothers view of Idiopathic Hypersomnia'
Read more about Emily's story
Read more about Jacquie's story
Read more about Emily's story
Imagine never feeling fully awake despite huge amounts of deep sleep.
Hypersomnolence Australia Founder and Director and Sleep Disorders Australia Chairperson Michelle Chadwick spoke to Narelda Jacobs and Joe Hildebrand at Studio 10 about her experience with Idiopathic Hypersomnia.
Click on the images below to learn more about
these awesome people #LivingwithIH
Living with Idiopathic Hypersomnia is only part of my story. Read more about Anna and see the photos she has shared...
I was diagnosed with Idiopathic Hypersomnia in 2017 after years of not knowing what was wrong. Living with Idiopathic Hypersomnia is only part of my story. I’ve been a police officer for over 20 years. Today I had to leave the job I love in the K9 Unit because it just was not compatible with this disease. Read more about Deb...
Idiopathic hypersomnia is only part of my story. I am a full time student working towards a BSc in geology. This means lots of field work and lab! I may take a few naps here and there but idiopathic hypersomnia is not going to stop me getting my degree.
Living with Idiopathic Hypersomnia is only part of my story. Read more about Anna and see the photos she has shared...
Read stories and perspectives by people living with Idiopathic Hypersomnia:
"I haven’t yet found my peace with the implications of living with IH, and so this is not at all a happily ever after story. I am sad a lot of the time because I am still grieving the impossibility of my life having many experiences that most take for granted. But I no longer blame myself for failing to live up to my expectations. My diagnosis at least allowed me to reach peace with myself and to extend myself a bit of compassion". Click here to read more from Emily
"I was finally diagnosed with Idiopathic Hypersomnia after more than a decade of trying to find answers. Suddenly everything made sense. I wasn’t tired like my friends and family sometimes said they were – I was chronically sleepy because my brain has never properly registered what sleep I’ve had and constantly wants more.” Click here to read more from Jacquie
"What I want people to understand most about my life with IH is that this never leaves me. I am never free of the chains of sleep. If I am not in a constant state of sleepiness, I am asleep. There is no reprieve. There is no getting my ‘spoons’ back. I never have any spoons to begin with!" Click here to read more from Annie
"So much of my life is swallowed by sleep – huge 16-hour chunks of my day are eaten up by deep, uninterrupted slumber that is entirely unrefreshing. My sleep inertia is so severe that multiple alarms barely scratch the surface, and I often rely on family to ensure that I don’t fall back to sleep". Click here to read more from Mia
"The most frustrating part of living with IH is definitely the effect it has on my memory and mental functioning. My brain can't retain memories for very long. I often get distracted and lose focus while at my job. My brain takes longer to process information than it used to. Sometimes I can't find simple words or phrases, or completely lose my train of thought. It's frustrating for me, and frustrating for those around me". Click here to read more from Nicole
"If you saw Becca out and about or at school you probably wouldn’t pick that she has a chronic illness. She’s so good at holding it together when needed, only to fall into a deep sleep for hours or days to recoup... For all the parents out there, who think your child has IH, push, push, push until you’ve been heard". Click here to read more from Anne (mum to Becca who is living with IH)
"Idiopathic Hypersomnia has an impact on nearly every aspect of my life - practically, socially, emotionally, and sometimes psychologically when I am faced with yet another instance of living in a world that is not suited to life with this kind of disability. Because there is no suitable medication I can take that will take away the overwhelming and unpredictable sleepiness I experience, the best way I can manage my sleepiness is to have several daytime sleeps. These daytime sleeps totalling about 3-6 hours in duration are in addition to the 10-12 hours of sleep I get overnight". Click here to read more from Trinity
"I have been on 10 plus medications and combinations but nothing has worked. I still sleep excessively; I struggle to wake up and despite all the sleep I still never feel fully awake. When I am awake, I am consumed by an unrelenting brain fog." Click here to read more from Anna
"My daughter suffers from Idiopathic Hypersomnia, a chronic neurological sleep disorder that leaves her fighting for energy and alertness every day". Click here to read more from Dee
"There is nothing worse than hearing people say things like 'I wish I slept as much as you.' or 'you’re so lucky!' NO, I'm not lucky and I hate it, I feel as though I’m missing out on so much of my life because all I want and need is sleep, and yet sleeping never makes it feel any better. I'm constantly exhausted!" Click here to read more from Katarina
"Je veux que les gens sachent nous ne sommes pas fainéants, nous sommes constamment fatigués comme si on n'avait pas dormi depuis plusieurs jours. Et malheureusement cette fatigue influence beaucoup notre quotidien, notre vie professionnelle et notre vie sociale." Cliquez ici pour en savoir plus sur Caroline
"Living with IH is difficult. I feel guilty all the time for all the promises that I have broken to my family and friends! IH has taken away so much from my life and I have so much guilt for all the missed time with my family and friends all because I was sleeping!" Click here to read more from Maryann
"Throughout these hardships, I remained firm, discovering my resilience and determination. I believe that my journey with idiopathic hypersomnia happened for a reason - to help others going through similar struggles. I started raising awareness about the complexities of this condition, becoming an advocate and source of inspiration for those facing invisible illnesses." Click here to read more from Aisa
“I am watching the years go by in a blurry fog and I’m gutted at the realisation I’m sleeping my life away. Equally painful is that my debts and responsibilities mean that after sleep, work is the priority in my life, and all else – my amazing wife and family, friendships, and everything else – gets barely a look in and the scraps of whatever attention and consciousness I can muster when not sleeping or working." Click here to read more from Andrew
"Even with 16 hours sleep a day I still struggle daily with reduced alertness, shortened attention span, poor judgement, reduced decision-making skills, poor memory, reduced concentration, mentally ‘stalling’ or fixating on one thought, moodiness and bad temper, loss of motivation, making mistakes by forgetting to do something, making mistakes by choosing the wrong option, problems with impulse control leading to risk-taking behaviours." Click here to read more from Tiffany
"I'm not a person who likes to draw attention to myself and focus on my struggles, however the truth is that I do struggle... The effects of living with IH affect me every day, beginning with the daily struggle of awakening from sleep... It takes an enormous effort to ply my eyes open when the alarm goes off so that I don’t fall back to sleep. I set a minimum of three alarms each night because I know the feeling of the impending struggle that awaits me in the morning to try and get going on that first alarm. I feel like I could sleep indefinitely. I need an average of 11-12 hours sleep per night to take just the edge off the feeling of sleepiness that is always there, but who has that amount of time to dedicate to sleep when there’s work to be done, dreams to be chased, life to be lived … I don’t want to sleep my life away." Click here to read more from Jane
“Every morning I wake with sleep drunkenness. The best way I could describe this is not as a strong desire to stay in bed and sleep a little longer, but that getting up is almost physically painful. I have lost count of the number of morning appointments I have missed because I have either entirely slept through my exceedingly elaborate alarm ritual or simply fallen back asleep literally within seconds of waking up… As if sleep drunkenness were not difficult enough to live with, the desire to sleep is ever-present throughout the day. ‘Tired’ is an entirely inadequate description for a sufferer of IH. ‘Tired’ is to IH as ‘questionable decision making’ is to Vladimir Putin. The feeling of tiredness is perpetual and unresponsive to behavioral interventions such as naps, longer overnight sleep, exercise and diet.” Click here to read more from Jeremy
"Being able to sleep for great lengths of time (anywhere) is shocking but is astoundingly one of the least impactful symptoms of this condition. The most frustrating symptom of IH for me is that no matter how much sleep I get, I never feel rested... I am constantly in a state of sleepiness. I never feel fully awake. I am fatigued and have a foggy brain, I can’t think straight, and I become confused quite easily as I feel so sleep deprived. Although technically I’m not sleep deprived because I get more than enough good quality sleep. Sleep just never, ever, leaves me feeling refreshed, no matter how much I have". Click here to read more from Sandy
"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." Click here to read more from Teamarie
"At 24 years old, I have to grieve the life, and the energy, I once had. I have to grieve all the things I can no longer do, the limitations I now have, and the frustration that builds up because I always have to sleep after doing ANYTHING... And it's not my fault. But there’s also nothing I can do about it. There’s nothing ANYONE can do about it. It does not matter how long I sleep, whether it’s 8 hours or 18, I will never feel re-energized. Click here to read more from Carla
"IH is often misunderstood (or misdiagnosed) and because of that, people make assumptions. They think we’re lazy, lacking energy, or not trying hard enough. They think this is something that you can “just get over” and that stigma can be frustrating to deal with. I WISH I could “just get over” this condition and finally feel rested after sleeping". Click here to read more from Caitlin K
"Because I don’t look sick, my strength is overlooked and discredited. Outsiders could never begin to imagine the wars I face against my own body. Every day I sense this sleepiness drain every ounce of life from within me. I battle through each day just to suffer the next. That takes real strength. Healthy individuals will never truly know how strong I am. I wish people understood how hard it is to function during waking hours. How emotionally challenging it is to sleep your entire day away, feel sleep deprived, yet STILL go out into the world trying your best to live. All I truly desire in my life, is to feel alive. I wish people understood how poor the quality of life is. My life just passes me by, even when I’m awake. Everything around me appears in slow motion. My precious life floats right on by, as if I’m not really there." Caitlin O'B
"Imagine how tired you would be after three nights of partying, drinking, barely sleeping and still working during the day. Imagine how hard it would be to have to drag yourself through the day like that. Every. Single. Day. That's my life, only I haven’t been partying, in fact due to the neurological disorder I have I can have more than enough good quality sleep and yet I wake up feeling like I have had no sleep at all." Click here to read more from Melissa
"Living with Idiopathic Hypersomnia is tough, to say the very least.
You are faced with a tidal wave of uncertainty and feelings of apprehension. You feel strength and weakness simultaneously, while you fight an uphill battle. Your existence can seem like a constant tug-of-war between your intentions to remain awake and the harsh reality of your illness". Click here to read more from Deni
"I used to love dancing and hiking and rock climbing. I used to enjoy going for long walks, and even going to the gym. Now, I find it hard to get out of bed. Most days I have so little energy, that I have to choose where to spend it. That means often having to forgo things that I need, like home cooked meals, household chores, or even showering. Things that take a lot of physical energy that we take for granted". Click here to read more from Olivia
"I find myself trying to make acceptable excuses instead of being honest that my IH is making my life really hard today.
Sometimes I will have a really great week or a few days and I'm so thankful for that time. Then when I want to enjoy time with friends and family I just can't. I can't make myself be social. I can't make myself stay awake. My body doesn't cooperate with what my mind wants. I fake a smile and a laugh to try and make it through whatever event that is going on. If my behavior seems off or not typical, please give me kindness and grace. I am still struggling to figure out how to have a good quality of life and manage this illness." Click here to read more from Erin
"When I was diagnosed with a rare neurological disorder my life changed.
At first I was in a state of denial about my diagnosis. I had been complaining to doctors about being “tired” (see note regarding terminology) for 8 years. After finally having an answer I felt like there’d been some sort of mistake. Initially after my diagnosis I had trouble allowing myself to accept that I do in fact have a rare neurological disorder. And all I wanted, leading up to that appointment was to have answers, to be diagnosed with something. I was diagnosed with idiopathic hypersomnia." Click here to read more from Caitlin O
"I am frequently late to a job I love. I nod off on the couch, or the toilet. I have anxiety about public transportation, because what if I fall asleep and miss my stop? I have slept through classes, through lunches, through cheerleading practice. I’ve had sunburns from falling asleep outside in the blazing sun... I’ve slept at family functions and holidays. I’ve canceled plans I was so excited for. If I had to drive longer than 30 minutes it was a constant battle of 'do I keep splashing water on my face and blasting cold air to push through till I’m home, or pull over and take a nap for 45 minutes to 2 hours?'...The New York Times published an article by Virginia Hughes on August 12th. And I’ve never been so disappointed by something that acknowledges my condition. This is what I’d like to tell the New York Times about their horrible article." Click here to read more from Kyra
"Today I saw an organization meant for educating medical professionals’ tweet to their nearly 3k followers that Idiopathic Hypersomnia is “yet another invented illness” with a link to the New York Times article.... This was my biggest fear when this article broke - that the stigma would make its way into the medical community when many of us were already facing it from our own doctors. Some were already, for example, afraid to ask our doctors about different treatments or to increase dosages for fear of coming off as a drug-seeker." Click here to read more from MP about 'that' New York Times article.
"It’s been 10 years since my Idiopathic Hypersomnia diagnosis, a diagnosis which took a further 20 years to finally receive.
Still, I’m frustrated. I don’t feel understood or valued by the medical community. I don’t feel like enough is being done to identify what causes IH and, consequently, how to effectively treat it or, dare I say, cure it. I want Doctors to take a good look at my brain and understand how and why it responds differently than a wakeful person’s brain. I want a Doctor who specialises in all sleep disorders, not either a Respiratory or Neurology physician. I want to be able to trust my body to rejuvenate from sleep and wake to an alarm. Most of all, I want to wake up feeling rested and refreshed, to have the energy and focus to live a normal life. I want to feel alive." Amanda
"I wish people understood how tired I really am.
I wish people understood the intense quivering feeling I have inside me that I might fall into the precipice of sleep and be unable to climb out. I wish people understood the uncontrollable experience of my eyelids closing when I’m meant to stay awake but can’t. I wish people understood the drugged, sedated feeling I operate under most days of the month and hours of every day, AND that the feeling begins 30 minutes after I wake up. I wish people understood how hard it is to run a family in this state, to study in this state, to continue moving forward. I wish they understood that this has been my entire life and I face the rest of my life in this state too." Amy
"My family often tell me to slow down; that I don’t always have to be on the move. Unfortunately for me, being on the move is what keeps me awake. The minute I sit down and rest, the exhaustion creeps in and every ounce of motivation is sucked from my body. I live in a constant state of tiredness. The only medication that allows me to feel even close to normal also makes me feel like I am constantly on edge, so I save it for the days I need it most. Living with idiopathic hypersomnia is different for each person; this is what it’s like for me.” Sheree
"Being diagnosed with Idiopathic Hypersomnia has not made the impact of this condition any easier.
Yes, it answered many questions and provided vindication that I was not making things up, depressed or just lazy. However, it came with a cost though! having to give up my driving licence and job after 34 years. Thankfully, I found support through the Living with IH EMEA support group. It is great to share experiences and discuss issues. Finally, the support of my wife and children has been invaluable to my coping with living with IH." Brendan
"It’s a funny thing, because so many people have stories of tiredness and exhaustion, and I kind of convinced myself I was lazy or weak. But no one is really with you 24/7 to see the whole picture, so they don’t realise that it’s happening so constantly, or that you’re not causing it to happen by staying up late/etc. It wasn’t until I lived with friends, and also went on a week-long business trip with friends/colleagues, that I had enough people saying “this isn’t normal” - because they could get a glimpse of the whole picture, and it wasn’t the same as theirs. They may have experienced parts of it, but it wasn’t their constant."
"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?
Being diagnosed with Idiopathic Hypersomnia has changed me in so many ways. I’ve learnt to love myself again and appreciate the things I can do. I’m stronger now. I am a fighter, a survivor. I will never give up this fight. Read more from Melissa Pittman
If you would like to share your personal story or other patient perspective on our website send it to email@example.com
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.