Effect of idiopathic Hypersomnia

When we are assessing ourselves for how IH affects us and when we are communicating it to others it would be helpful to clearly separate and specify four different factors:

•  1) How it makes us feel physically (intensity of sleepiness, etc)
• 2) How it affects our abilities
• 3) How it makes us feel emotionally
• 4) How it affects people around us

We have a tendency to just focus on how sleepy we feel. We talk to each other and other people about how we feel so sleepy all the time and that’s why life is so hard and we just can’t do things because we feel so crappy. Yes, that is a big part of IH, probably the biggest, but that is also the part that they think they can identify with because “they know what it’s like to be really tired.”

Thus, we need to focus more on the other effects of the sleepiness. We all have talked about how we push ourselves so hard to get through the workday, but everyone feels like they push themselves to their limits to do their job so we have to be more clear and focus on how it affects our ability to function regardless of how much effort we put in. I used to always say that “can’t” isn’t in my vocabulary (of course it obviously is since I just said it) so if there was a challenge I would do whatever it took to conquer it, but I have had to accept the fact that that ability is simply gone. I have 90% of what it takes to do just about anything, but that other 10% is kind of a deal breaker.

If you are going to dive into a battle you have to have the confidence that you can win and the skills and ambition to make it happen, but when you are diving into a battle it is just as important to know what your weaknesses are as it is to know your strengths because if you deny that weakness your opponent will find it and you will be done. Regular life is the same way, and in life with IH it is a very big deal because you have obvious weaknesses and we all want to hold on to our pride for as long as possible but facing your weaknesses head-on and acknowledging that regardless of how deeply you are devoted to following through with something you just can’t anymore can bring you some clarity. Getting comfortable with the word “can’t” can actually be liberating. Saying “I can’t” takes some pressure off of you because you are no longer bound to expectations that you can’t meet. It can help you establish realistic goals and instead of struggling or failing at a higher level, you can be successful at a lower level.

Disadvantage of Idiopathic Hypersomnia

When you accept this for yourself you can clearly work on helping others understand where you are at the actual, real effects that IH has on you, and how you may despise it to the core but it’s just how it is.
There is no such thing as a pill you can take to replace sleep. A normal person can’t stop sleeping and take a pill instead and expect to function normally. I think some people compare us to how they use caffeine when they get tired during the day and once they get rolling they feel as sharp as can be, but their tired isn’t IH tired. Some of us may feel fully “awake” with the help of meds, but for a lot of us, it’s just energized, not awake. The lights are on but nobody’s home. There is no substitute for restorative sleep.

How we identified Idiopathic Hypersomnia

From there you can move on to identifying the different ways that it affects you emotionally, like how frustrated you are about your job situation, and how it is so hard to maintain a positive attitude when you feel like total crap every second of every day, how guilty you feel because of how your IH affects the people you care about, and if you are no longer able to work that adds a whole new issue because you feel like IH has completely taken over your life, that you have given up on your dreams, feeling judged by others on a whole new level, becoming more isolated from the rest of the world, feeling like a burden on society, or whatever.

Finally, you should try to identify how your IH affects those around you, talk to them about it, and come to an understanding of things. If your significant other or coworker has to take on additional duties because you can’t anymore, look for other simpler duties have they been doing that you can take on to give both you and the other person the feeling that you are doing your best to carry your weight?