Living With an ‘Invisible’ Condition Like IH

Medically Reviewed by Neha Pathak, MD on March 22, 2024
5 min read

Life with idiopathic hypersomnia can be quite challenging. If you always feel sleepy, it can be hard to do work, raise kids, take care of your home, and even do things like drive or run errands. 

But there’s one thing that makes IH even harder: It’s an invisible disability. On the outside, you may look fine. You don’t need to walk with a cane, and you don’t appear visibly sick. Because of this, people may not understand that your IH and its treatment can significantly impact your day-to-day life.

Your doctor will prescribe medication to treat your symptoms. Taking your medication is a simple step. But there are some things you should keep in mind as you follow your treatment plan: 

It may take time to find the right medicine and dosage. Some medicines may work for you, while others don’t help at all. Or you may find that the dose your doctor prescribes isn’t right. Allow time to decide if a medicine is helping you, and to work with your doctor to make adjustments if it doesn’t. 

You may need to change medications from time to time. You may find that a medicine that’s worked for you becomes less effective as your body adjusts to it. It can be frustrating to have to adjust your treatment plan, but you may need to make a change in your dosage or find a new medication. 

You may need to plan breaks in your treatment. Instead of finding a completely new medication, it may help to pause it for a short time. During this time, you’ll need to be ready for your symptoms to come back and make adjustments to live with them. For example, you may want to order out for dinner if you don’t feel up to cooking or ask a friend to drive if you do have to go out.

Your treatment will help you best if you also take steps in your day-to-day life to manage your symptoms. Like your treatment plan, it will likely take some time and experimenting to find what works best for you. Here are some that you can try: 

Nap strategically. Some people with IH find naps helpful, while others find they make symptoms worse. If you do nap, experiment with different times, ranging from 20 minutes to 2 hours.

Meditate. It helps your brain rest, which may make you feel less sleepy. Try movement meditation, such as yoga or mindful walking. The exercise may stimulate you, so you are less tired.

Exercise. Research suggests it can help to reduce daytime sleepiness, especially if you’re depressed. One study found that levels of two brain chemicals linked to hypersomnia – brain-derived neurotrophic factor (BDNF) and IL-1 – were lower after a 12-week exercise program.

Eat frequent, small meals. If you eat a big meal, it may make you sleepy. They’re also harder to prepare. If possible, try to schedule larger meals around a nap, so that you can doze after you eat. Avoid caffeine and alcohol later in the day – both can disturb your sleep.

Keep a sleep journal. It will help you figure out which activities and times of day make your symptoms better or worse. Share them with your doctor. It will help them figure out whether you need a medication change. It may also offer you insights on how to better manage your day. You’ll want to include the following:

  • Medicine names, as well as the time you took them and the dose
  • Naps, including what time of day and how long you slept
  • All activities you did that day, including work, doctor appointments, exercise, and housework
  • Timing of meals, and what you ate
  • Symptoms you notice every day

Consider a service animal. They can help you wake up in the morning. They also nudge you if you start to fall asleep somewhere that you’re not supposed to, like in a class or while you drive. 

Be careful driving. People with IH are twice as likely to get into a car accident as those who don’t have it. You should talk to your doctor about whether it is safe for you to drive, especially if your IH is well-controlled.

Ask for accommodation. Since IH is an invisible disability, teachers or employers may not realize that you’re affected. Under the Americans with Disabilities Act (ADA), you’re entitled to reasonable accommodations. This may mean that you start your day later, or end earlier, or that you sometimes work from home.

It can be tough to explain your IH to others, whether it’s friends, co-workers, a new love interest, or even extended family. In general, you’ll want to come up with a brief explanation of IH and how it affects you day to day. Some things to keep in mind:

Explain the condition. Most people will never have heard of IH before. It helps to explain that it’s a very rare sleep disorder that makes you very sleepy during the day, even after a good night’s sleep. It’s idiopathic, which means its cause is unknown. Mention that it’s a chronic neurological sleep disorder, which means it affects your brain and nervous system.

Describe your symptoms. It’s best to focus on what it feels like: For example, you are so sleepy during the day that it’s very hard to think clearly. Or you sleep for at least 11 hours a night, and it takes you over an hour to fully wake up.

Explain how IH affects your everyday life. It may make you so tired it is impossible to function. Or you feel so sleepy that you are afraid you will fall asleep behind the wheel. This will help them to understand, for example, why you want them to drive, or why you frequently use taxis or a ride-hailing service.

Communicate what you need. If you are talking to your boss or co-worker, for example, you may need to explain that you need to take a nap at work every day in a quiet room, or a break to take a brisk walk so that you can stay awake.