Accepting Life With Idiopathic Hypersomnia (IH)

After 25 years of symptoms, I was relieved to finally be diagnosed with idiopathic hypersomnia (IH). There was finally confirmation that I was not crazy, that what I was experiencing was real, and that it even had a name.

The relief of an idiopathic hypersomnia diagnosis

I could begin to heal from the weight of negative opinions from friends, gaslighting from doctors, and laughter from family. I imagined waving my diagnosis papers in the faces of everyone who did not believe me and yelling, "I told you so!"

Okay… I did not actually do that. But I really wanted to.

After my imaginary "told you so" celebrations ended, I stood face-to-face with my new reality: I have IH. Every day, for the rest of my life, I will be affected by a chronic neurological sleep disorder.

Wow.

My diagnosis answered questions about my past, but it also created brand-new questions about my future.

My first emotion was relief. For others, it may be grief, anger, fear, or something else. In my opinion, there is no wrong emotion when you are hit with life-changing news. Eventually, though, there was one thing standing in the way of me and peace.

It was time to accept that I have IH.

A fork in the road with IH

Visually, I saw myself standing at a fork in the road. Being a very black-and-white thinker usually does not work out well for me, but in this instance, it was helpful. I needed to simplify things in order to wrap my mind around them. As I saw it, there were only two choices:

A. I could go through life feeling sad or angry, resisting IH, and focusing on the things I was missing. I could remain stuck in grief over the life I once dreamed of.

OR

B. I could work toward finding peace and contentment with my reality. I could learn to work with IH as I create my future and redefine what success looks like for me.

When I put it this way, I knew which choice was right for me. I cannot choose how IH will affect my future. But I can choose how I respond to the life I have with IH.

What acceptance of IH really means

Acceptance does not mean I am happy about having IH. I still have moments when I wish my life were easier. And acceptance definitely does not mean giving up. I think acceptance looks more like ending the fight against reality. The energy once used for fighting and resisting can be used to figure out how to live well within it.

Building a life that works with IH

I chose option B, and I am unapologetically building a life that works for me and my symptoms. This part of finding acceptance has been quite freeing for me. I am learning to stop measuring myself against people who do not have IH. I do not feel pressure to prove that I can do everything just as quickly as everyone else. And I am saying "no" more often.

Honestly, saying "no" has meant disappointing some people. It is an uncomfortable feeling. But when I simplified the situation to only two options, I knew that the answer was to choose my own well-being. I could either:

A. Disappoint others.

OR

B. Continue disappointing myself by neglecting my medical needs just to keep everyone else comfortable.

Redefining your story with idiopathic hypersomnia

For you, acceptance may mean asking for work or school accommodations, scheduling important activities around your energy, taking naps when your body says it is time, or changing the expectations you once had for yourself.

You can still have goals. You can still travel. You can still have a career, relationships, hobbies, adventures, and a full life. IH may change how you do some of those things, but it does not get to decide your entire story.

You decide your story.