Educating others about your sleep disorder
such as idiopathic hypersomnia, narcolepsy type 1 or 2, or Kleine-Levin syndrome
If you have idiopathic hypersomnia (IH) or a related sleep disorder, educating other people about your disorder can be a big challenge. Most people won’t know what a hypersomnia is or how much it can affect your life. These disorders are uncommon and are “hidden” or “invisible” because others can’t see by looking at you that you have a serious health issue.
To advocate for yourself and help others learn:
- Be able to describe your disorder to others in a few sentences
- Help others, such as your family, friends, teachers, coworkers, and even your doctor and other healthcare professionals, learn about your disorder and how it affects you
- Remember that it may take time for them to start understanding your disorder, so try to be patient and open to answering their questions
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What situations do I need to prepare for?
It’s hard to predict when you’ll need to explain your sleep disorder to someone. It helps to practice giving a brief, 3 to 4 sentence description of your disorder and how it affects your life.
The topic often comes up unexpectedly, like when you’re meeting someone new or when you have to explain why you can’t do something.
Planning a conversation
Other times, you may want to plan a conversation with someone, especially when you need accommodations (such as extra time to do a work or school task) or support from that person. You may want to:
- Schedule a talk at a time of day when you are most likely to be wakeful
- Think ahead about what you want to say about your disorder and how the other person could help support you—consider practicing what you’ll say
- Bring a phone or tablet to show online resources, or print out specific pages
- Consider sending an email and links to resources to them after your conversation
How do I help people understand that I have a serious medical condition?
1. Start by saying something like,
“I have a chronic (long-lasting) neurologic sleep disorder—that means it affects my brain and nervous system. I’ve had many tests including sleep studies, and I’ve been diagnosed with idiopathic hypersomnia, called IH for short.”
2. Briefly describe your disorder. Many people are familiar with narcolepsy, so it may help to say,
“You may have heard of narcolepsy, which causes people to fall asleep during the day. Narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome are in the same family of sleep disorders.”
3. Describe your symptoms and how they affect your daily life. Explain that sometimes symptoms can get better or worse, but most people with idiopathic hypersomnia have it for the rest of their life. Visit the next 2 sections for sample descriptions to adapt and use.
“IH is a long-term medical condition that causes me to feel sleepy nearly all the time, no matter how much I sleep. It’s exhausting and makes it hard for me to think clearly.”
“Having IH means my brain is almost always too foggy to work well. My brain feels painfully broken from lack of sleep, no matter how much I sleep.”
“Brain fog from IH can make me feel confused, disoriented, irritable, and not able to think clearly or remember things. This symptom can suddenly worsen, especially as my need for sleep builds up or during periods of sleep inertia. When it’s at its worst, it’s like I’m delirious.”
“I’m very 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’ve slept, no matter how much sleep I get.”
“I sleep much more than normal, often 11 or more hours each day. And waking up fully takes over an hour and is the hardest thing I have to do each day.”
“Even when I’m “awake,” I’m trapped between sleep and wakefulness, like I’ve never slept at all.”
Use comparisons to help explain how you feel:
“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. And the next.”
“Having IH can be compared to pulling an all-nighter with a baby. I’m awake, but my brain is mush.”
“Having IH is like pushing the gas pedal of a car while the parking brake is on. No matter how much I accelerate, my car barely moves.”
How can I explain how IH affects my daily life?
Most people can’t imagine how much IH affects your daily life. Try telling them:
“Imagine trying to do all that you generally do in a day, but you haven’t slept at all for many days. That’s how most people with IH feel every day.”
“Everything in my life is impacted by my severe sleepiness, no matter how I try to improve things.”
“Having IH means trying to live with overwhelming sleepiness, every single day.”
“I have very few, if any, productive hours in a day because of being so sleepy and having brain fog.”
“Because I have to sleep more than 11 hours a day and still don’t feel refreshed, I have very few hours a day in which to live my life.”
“Having IH means I constantly feel overwhelmed by simple tasks. Some days I’m able to get a few things done. Other days, I can’t function at all.”
“Staying awake uses up all my energy. It is an endless, exhausting battle. Every day, I have to force myself to stay awake to do anything.”
Writer and advocate Christine Miserandino created “spoon theory” to help explain how invisible disabilities affect someone’s ability to live their daily life. Watch this brief spoon theory YouTube video.
How can I explain to my doctors, teachers, and employers what I need from them?
If you’re working with a healthcare professional who isn’t very familiar with these sleep disorders and their effects, refer them to our web page “Professionals working with people who have hypersomnias.”
- If you’re a student needing to have a conversation with a teacher or other educator, visit our web page “Going to school while coping with a hypersomnia.”
- If you need to have a conversation at work, visit our web page “Planning for job accommodations and disability income.”
How can I share the stories of others like me?
Sharing the stories of other people who have hypersomnias can show your loved ones that you’re not alone in this struggle. Share these videos and personal stories with others who want and need to learn more about your disorder. Even better — watch or read them together, then talk about them!
Videos:
Narcolepsy
Project Sleep’s Rising Voices video series
Kleine-Levin syndrome
KLS Foundation’s videos archives
Personal journey (PJ) stories:
Find more of our shared “personal journey” stories from people with hypersomnias, and consider sharing your own story. Visit our web page “What’s it like to live with a hypersomnia?”