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

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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.

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.

Another issue which is probably related to both the lack of focus and lack of linear thinking is the tendency people with IH/narcolepsy have with finishing things before moving on to something else. Yep, it can be pretty normal for someone with IH/narcolepsy to have a house full of unfinished projects. Nagging them about it won’t help the situation. Anticipating it and helping them stay on track will. 

People with IH/narcolepsy may get medications to help them with energy, mental clarity, etc., but there is no replacement for restorative sleep. Healthy people can’t stop sleeping at night and take a pill in its place, and people with IH/narcolepsy are no different. These meds may help some people gain mental clarity, but they still may be struggling to stay awake most of the time. Or they help some people stay awake, but may do nothing to help with clarity and can actually make it worse.

A very good friend of mine says: “My meds just help me do stupid stuff faster.” They may provide the energy to do things, but they can take away a person’s ability to channel that energy properly. Have you ever pulled an all-nighter and relied on high doses of caffeine to get you through the next day? Yes, you made it through the day and you accomplished some stuff, but do you remember how you felt all day? How many days in a row do you think you could do that? That is just about exactly how I feel when my meds are working their best.

On top of all of the internal difficulties people with IH/narcolepsy face, other people sometimes just don’t get it. As a disabled workaholic, the thing that really gets to me is the way people tend to think I am lazy. I am constantly judging myself on my productivity (or now typically my lack thereof) and [name] is probably the same. He has probably become accustomed to being criticized for not trying hard enough by people who aren’t putting forth nearly the effort she is. When he appears to be sitting on the couch doing nothing he is probably wondering how it will be possible to accomplish everything that needs to be done. If he is still employed he is probably struggling more to keep up at his job than he lets on, and if he is no longer able to work he needs more emotional support than you can possibly imagine. If [name] is like almost every one of the thousands of people with IH/narcolepsy I have talked to in the past couple years, he is constantly beating himself up for what feels like constant failure.

I have often been told that I just need learn to cope like other people with other diseases do so I can function like a normal adult.  The problem is that IH/narcolepsy lies right where a person’s ability to cope is supposed to come from, so getting irritated with them for not functioning right is like getting irritated someone with emphysema for not being able to breath right.

In closing I have one request — I ask that you try to remember this letter next time you are at a family gathering. Try to remember to watch [name] here and there as he is sitting and talking to friends or relatives for hours. Has he held a smile on his face a lot of the time, and displayed interest in what everyone is saying and doing? If so he probably deserves an Oscar, because to sustain that act and hold back all of the tired crappiness inside takes a hell of an effort and it should not be overlooked.


Dean Jordheim

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Originally published: April 29, 2016
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