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A Letter for Anyone Who Doesn’t Realize The Challenges of Idiopathic Hypersomnia and Narcolepsy

I wrote the following letter for members of several idiopathic hypersomnia and narcolepsy support groups on Facebook. Some people have personalized it as they see fit, and I have sent out personalized copies for a few hundred others. I don’t know the exact details of the struggles faced by people with other invisible/chronic illnesses, but I do know quite a few of them face a lot of the issues addressed in this letter, which is meant to be shown to those who don’t understand these challenges.

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To Whom It May Concern:

I am writing this because [insert name] wanted to help you better understand some of the issues he faces on a daily basis because of idiopathic hypersomnia (IH) or narcolepsy.

The first thing I can promise you is that he hides as much of his suffering as possible because showing it would drag everyone else down. This is commonly referred to as our “game face.” If you ask “How are you?” the response you get is relative to how he feels all the time, so it doesn’t mean the same as when you use the same words. If the response is “Good!” it probably means he is really tired but is dealing with it well enough to almost function like any other person. There is also a pretty good chance that it is a flat-out lie. If the response is something like “OK” or “fine” he is struggling and needs your help. If the answer is “tired” he is on his last leg. Something more like “crappy” is an indicator that, if you really care, you need to send him to bed and keep the kids quiet or take them outside or somewhere else so he can sleep.

When you have IH/narcolepsy, your body usually gets plenty of sleep, but your brain is in a constant state of sleep deprivation. People with IH/narcolepsy carry a significant amount of sleep deprivation which only gets worse over time because sleep doesn’t provide relief. The most common symptoms of sleep deprivation are forgetfulness, memory issues in general, difficulties with concentration, decision making, and overall ability to think clearly. The extra effort required to focus on the issue at hand makes it very easy to forget about things that are out of your field of vision, causing problems with anything that resembles multitasking. The emotional results of sleep deprivation are probably the easiest to see, though. I am sure you are familiar with how easy it is to get cranky when you are tired? Now imagine fighting off this crankiness every minute that you are awake.

When you have IH/narcolepsy, your head is often a blur of thoughts and instead of mentally lining steps up in chronological order, everything just blurs together, so nothing goes as planned and you wind up being late for things regardless of how important they are to you, making time management difficult.

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