Living With Idiopathic Hypersomnia

There are day where I am so tired I rather die so I can get all the rest I will ever need. Days that I am so tired, out of energy that I don’t leave my bedroom. It’s one thing to complain about being tired but it’s another to never feel what full rest is. To never know what it is like to have a ‘good night sleep’. For people living with Idiopathic Hypersomnia this is their life. People with IH can sleep 1 hour or 20 hours and never feel rested, rejuvenated, or energize. It is a rare neurological disorder affecting about 1% of the population. There is currently no cure and very little treatment options. Since the disorder main symptom is excessive daytime sleepiness, stimulants are proscribe to help with the issue. But most overtime get used to the drug so it is only a short term solution. Imagine being tired after doing just a single task in your day and being drained for the rest. With you body feeling like it needs to sleep in order to function, even though you just woke up four hours ago. Even as I type this I am struggling to maintain focus to finish.

This disorder is a lifelong crippling, disabling disease. The public awareness about it is extremely low and it makes sense for it to be. No one wants to hear about a disorder that makes people sleepy all day. The stigma that goes along with IH is that people are just lazy, unmotivated, are weak minded. But think of yourself when you’ve gone almost 24 hours without sleep. Now think about how you function… That is how a person with IH lives their life on a daily basis. The constant brain fog and autonomous behavior. The constant struggle to stay awake at work or at school. Life in this world is already hard enough without a neurological disorder weighing down on your life.

People with IH also suffer from abjectly and depression. Depression being a huge issue. Feeling hopeless and agitated all at the same time. To feel trapped in your own mind and a prisoner of your own body. Trying to forever escape the tired zone that is your existence. Of course very few can comprehend and understand. I’m not sure the world will ever accept IH as a serious disorder. But I write this for myself and the others out there who suffer from it to let them know that they are not alone. That there are others out there with it and who understand. We are all in this fight together. And we all take on this fight one day at a time…. Continue to fight your battle!


Published by Damien Jackson

A free thinker who is aware of what goes on in the world.

4 thoughts on “Living With Idiopathic Hypersomnia

  1. OMG! I think i suffer from this and it is sooo draining. My relationships suffer because of this, either im lazy or sleep too much.. I HAVE to do things that make me move constantly or really have my interest or i’ll nod tf out haha… currently at WORK, i read this because i will literally DIE or boredom and sleepiness if i dont do SOMETHING RN. Hopefully they will come up with something for us. A lot of people say “excersize” but even while i excersize i yawn and get sleepy!! Nuts, take care XO

    1. The struggle to do everyday tasks is rough sometimes. I stick to a consistent routine that kinda helps lol. The best thing I do is try to mentally push myself throughout the day which is a challenge in itself lol. I did an episode on my podcast that goes more into depth about it. Give it a listen 🎧. Maybe it’ll help out or maybe it’ll put you to sleep 😴🤷🏾‍♂️😂😂…..

  2. Hey, Damien!
    Thank you for writing this! I have IH, too, and most days I feel incredibly alone in my struggles. It’s impossible to try and explain to people that I’m exhausted because I suffer from a chronic illness. Because we look healthy, I think people think we’re lying when we tell them we’re sick and that what should be a simple task- takes an enormous effort on our part. I also struggle with constant feelings of guilt for all of the things I want so desperately to do with my kids, but can’t because of this miserable disease. I just pray they find a cure before my boys are grown up so that I can give them all of the fun little kid adventures that I dream of having with them. I appreciate you putting this message out there! It’s good to know that there are other people who know exactly how I feel. 🙂 Take care!

    1. You’re welcome… I’m happy that my blog was helpful to you. Stay strong! Everyday is a battle. Sometimes you loose and sometimes you win. Always try to put your best effort in each day regardless of the amount of effort you put forth, at least you know you tried. I understand your feelings about your kids. My son wants me to play basketball with him sometimes and I explain to him that I’m not what I used to be. It hurts that he’ll prolly never see me at my full physical health. But I have to remind myself that being there in your kids’ lives is the most important thing. You’re not alone dealing with this medical issue. Everyone may not understand and that’s ok. As long as you know and are honest with yourself, that’s all that matters. Thank you for your response and be well!

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