Dating with narcolepsy or idiopathic hypersomnia

Dating is hard enough! Let’s make it simpler

Having a sleep disorder, such as narcolepsy or idiopathic hypersomnia, adds a layer of complexity to the already confusing world of dating. It is common for adolescents with narcolepsy or idiopathic hypersomnia to experience some additional struggles, which include:

• Feeling sleepy during a date.
• Worrying about whether a date is scheduled at the ‘right’ time for their sleep schedule.
• Pressure to use alcohol/other substances, which can interfere with their sleep medications. For example, alcohol is strongly discouraged for patients who use sodium oxybate.
• Experiencing cataplexy.
• Not being able to qualify for a driver’s license.

Deciding if and how to discuss your sleep disorder with potential dating partners is an important question to consider. It is not an easy question either, because you have to balance being vulnerable to someone you may not know very well and being open with someone you are interested in.

What is the right amount of honesty and the right amount of privacy?

There is no right answer. Every person has their unique thoughts and beliefs. Some teens will share with everyone they meet. Some teens won’t share with anyone, at all. This will be a very personal decision that you make, knowing that whatever decision you reach, is the right one for you.

Keep in mind that sharing this information can give you power! You own your sleep disorder, which means that you don’t have to make excuses when things come up that are very typical of someone with narcolepsy or idiopathic hypersomnia. For example, having to cancel a date at the last minute because you are too sleepy is less of an issue if your dating partner understands what it means to have narcolepsy or idiopathic hypersomnia. Being able to effectively communicate with someone is one of the most important parts of dating, and using your sleep disorder as the subject for discussion can help improve your ability to communicate about other important aspects of your relationship.

How do I start the conversation?

There are several things for you to consider before you have the conversation.

1. What do you hope to accomplish? When you fully understand what your goals are, then it will help you find the right words to express your needs!
2. Write down what’s important and practice. Make sure that you write down a list of all of the important areas you want to discuss so that you don’t forget to bring up something that matters to you. If you can, find a trusted friend or family member who you can practice having the conversation with. It will help you get the butterflies out of the way.
3. Let the other person know you have something important to share with them. It can be difficult to wait for the ‘right’ moment to come up. Even though it can seem intimidating to set up a time to talk, this will reduce the chances that a distraction will come up and interrupt you, and will help prepare your partner to be ready to listen.

Things to talk about with your sleep doctor.

Because you might take certain medications that other adolescents are not taking, there are important dating-related things to bring up with your sleep doctor.

1. If you have experienced cataplexy before, you may experience it again when you feel an intense emotion. This can happen when you are intimate with a partner.
2. Some birth control medications are less effective if you are taking medications such as modafinil or armodafinil.