When you have idiopathic hypersomnia (IH), it may seem like no quantity of sleep is ever enough to leave you feeling rested and alert. IH is a condition in which for no clear reason – that’s what idiopathic means – you always feel sleepy even after a full night’s sleep. You may sleep 11 hours or more at night, and even after that much sleep, you still find it very difficult to wake up when the alarm goes off.
IH drains your energy and affects every aspect of your life, including school, work, social life, and personal relationships. What’s more, people can’t tell by looking at you that you have a medical condition. Many jump to their own conclusions and judge those who have IH. These challenges can make it very hard to live with IH.
Here, Eric Zhou, PhD, a psychologist in the Division of Sleep Medicine at Harvard Medical School, paints a picture of the challenges of living with IH and how many of his patients overcome them and live full lives.
What are the real-life day-to-day challenges of living with IH?
What stands out about idiopathic hypersomnia is the way it can affect an entire day. From the moment a person wakes up, they can feel confused and anxious. During the day, patients often describe a constant feeling of sleepiness that doesn’t lift, no matter how much they slept the night before. Completing routine activities throughout the day, like getting dressed, preparing meals, even carrying on conversations, can feel like moving through mud.
People with IH have to make sacrifices. If a person with IH needs 11 hours of sleep every night, they’ve got three less hours to accomplish everything they need to in a day than the average adult who needs eight hours of sleep. Those three hours have to come from somewhere. They may have to choose, for example, between work or school and a social life.
Unfortunately, because idiopathic hypersomnia is often misdiagnosed by professionals and misunderstood by friends and family, there’s the added challenge of facing judgment from others. This can lead to feelings of guilt and isolation.
How does IH impact people’s careers?
It starts in school. If you’ve had symptoms before adulthood in high school, in college, or in graduate school, you’re often choosing a path or choosing a class or work schedule that allows you to sleep. This can limit your choices. People with IH may have to make life decisions around their sleep disorder – choosing a career, for example, that has an early shift or a night shift so that they can sleep when they need to.
Again, if you’ve got three, four, five extra hours a day to study or to grind at the office and stay up late and finish what your boss assigns you, you move ahead. Somebody with IH, or anybody for that matter who works fewer hours a day because they need to sleep, is going to be less likely to move ahead.
What kind of judgment do people with IH face, and how do you help them cope with that?
By the time patients get to me, they have been called “lazy” or “unmotivated” for months, if not years, because the symptoms of IH look a lot like laziness. Sometimes just getting a diagnosis, an explanation for why they feel the way they do, can bring them a great sense of relief. But there can also be a great deal of resentment for having been mislabeled for so long and judged for things that they can’t change.
The work we do is focused on the question of how the patient processes what they’ve gone through. That starts with education. They need to understand that their experience is not exclusive to them. These experiences are actually the norm for people who have IH. Now that they know that, it’s time to put that chapter behind them because there are so many things that they can do that can move them forward.
What can people with IH do to move forward?
A well-constructed medication plan is an important part of treatment. Beyond medication, it comes down to creating predictable rhythms and routines. I work with patients to build sleep and wake schedules that are aligned with their work/school/life obligations and that include sufficient sleep opportunities. This provides an anchor for their day and can help to lessen the impact of their sleepiness. Some patients find it useful to take scheduled, short naps, although naps are not always refreshing. We also talk about organizing tasks so that the top priorities are scheduled when energy is highest, which varies from one person to the next.
Psychological support is crucial, too. We work on reshaping negative thoughts about their self-worth. We also address stress management and symptoms of depression, which are common among patients with idiopathic hypersomnia. We talk about the impact of IH on their social relationships. We also discuss whether accommodations may be beneficial in work or school settings.
Can people with IH live what they would consider successful lives?
Absolutely. I can share many examples of patients who I see with IH who are remarkably successful — doctors, lawyers, business leaders. They have to figure out a way to do the same or better work in fewer hours. So it’s not that people with IH cannot have these successes. It’s that they achieve these successes despite having IH.
