Describing Idiopathic Hypersomnia in a Nutshell

It is often difficult for people who have idiopathic hypersomnia (IH) to describe how profoundly it impacts their lives. Many have asked for ideas and suggestions to best describe this chronic, rarely-diagnosed neurologic disorder in simple terms to friends, family members, and acquaintances. The suggestions below are therefore not necessarily intended for medical professionals, who would likely want and need more detail.

Since each person who has IH experiences symptoms in different ways, and at different levels of intensity, this Advice Guide is designed to offer a variety of suggestions. Feel free to utilize those that “speak” to you or seem true for you or would best reach those who want or need to know more about IH.

Using Medical Terminology

• I have (or my loved one has) a chronic neurologic sleep disorder.
• I have a neurologic sleep disorder that makes me extremely sleepy all of the time, no matter how much I sleep.
• I have a chronic medical condition that causes extreme sleepiness nearly all of the time, no matter how much I sleep.

Using Metaphors, Similes and More

• Having IH is like having severe jet lag that never goes away.
• Having IH is like taking Nyquil or a sleeping pill in the morning and trying to function all day.
• Having IH feels like coming out of anesthesia, but it lasts most (or all) of the day and happens again the next day.
• Having IH can be compared to pulling an all-nighter with a baby. You’re awake, but your brain is mush.
• Even when I am “awake,” I am trapped between sleep and wakefulness, like I have never slept at all.
• I feel like I never get to sleep. Every. Single. Day.
• Every single day, I feel like it’s the day after multiple sleepless nights in a row.
• Staying awake uses up all of my energy. It is an endless, painful battle.
• Every day, I have to force myself to stay awake to do anything. It is a constant battle. It is exhausting. Some days I’m able to get a few things done. Other days, I can’t function at all.

Describing Life With IH

• Imagine trying to do all that you generally do in a day, but you have not slept at all for many days. That is how most people with IH feel every day.
• Everything in my life is impacted by the severe sleepiness I experience, no matter what I do to try to improve things.
• Having IH is trying to live with overwhelming sleepiness, every single day.
• I have very few, if any, productive hours in a day because of profound sleepiness and brain fog.
• Having IH means feeling constantly overwhelmed by simple tasks that are often insurmountable.

Describing Symptoms

• Having IH means my brain is almost always too foggy to function properly. My brain feels painfully broken from lack of sleep, no matter how much I sleep.
• I am extremely, relentlessly sleepy almost all the time, no matter how much sleep I get. And if I don’t get the sleep I need, I feel even worse.
• I never feel refreshed or restored from sleep.
• I never feel as if I have slept, no matter how much sleep I get.

If you would like to share other ways to describe IH in a Nutshell, please contact us at .

*Members of the Hypersomnia Foundation Patient Advisory and Advocacy Council (PAAC) who either have a hypersomnia or are supporters offer this advice (2021).

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