Shame is a Liar and Cannot Stay Here

By Taya Austin

3 min read

Recently I was considering going on a trip with a friend group. One of my friends in the group said, "Did you tell the trip host that you don't go anywhere?"

When idiopathic hypersomnia looks like a character flaw

The comment took me by surprise, but I replied, "I go places." My friend had a look on her face that said she did not believe me. With a questioning tone and a curled-up lip, she tilted her head to the side and asked, "Where do you go?" When I am annoyed, I get a little spicy. I said, "I go wherever I want to go, but when I want to – not when anyone else thinks I should."

Honestly, I do not know if she was referring to my introversion or IH, either way, the comment stung. This friend has been incredibly supportive throughout my diagnosis journey and my advocacy endeavors. I was honestly shocked to hear her say this.

There is something uniquely difficult about having a condition with symptoms that resemble behaviors that society says are character flaws. If you limp, people may assume you're injured. If you sleep for 12 hours and wake up at 2PM, they may assume you are lazy.

I've heard all of it:

Sleeping late is lazy.
Napping is unproductive and shows a lack of discipline.
If you tried hard enough, you could stay awake.

Living with IH you may find that people have lots of opinions about sleep. Teachers, family, friends, teammates or even strangers have thoughts and do not mind sharing them. Over the years, when you hear something enough you can start to believe it. As it continues, you may even begin saying those things to yourself. That is when stigma becomes shame.

How stigma about idiopathic hypersomnia becomes shame

Stigma is what other people believe about you. Shame is what happens when you begin to believe they are right. Shame is an emotion we feel about ourselves. For me, shame manifests as a discouraging voice in my head.

Shame made me feel like I had to prove that I worked hard enough, and that I was responsible or motivated enough. It made rest feel like something I had to earn. It made me feel guilty about what my body needed.

Unlearning shame after an IH diagnosis

After my diagnosis, I began a journey of "unlearning" the things that made me feel shame about having IH. I make the decision that shame would not consume me.

Shame will not dictate when or if I take a nap. It will not control whether I attend an event or apply for my dream job. My goal is to regulate my emotions effectively and take back any control I allowed shame to have over my mind. Here a few things that are currently working for me.

Learning about IH

Before diagnosis I asked, "What is wrong with me?" The more I learn about IH my thinking shifted to "There is a medical reason my body does this." When I understood what was happening to me as medical symptoms and not as proof I was failing, there was less room for thoughts about being "lazy," "unmotivated," or anything else I had come to believe about myself.

Learning about IH helped me to view my symptoms with more grace.

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Practicing mindfulness with IH

I did not realize that I used stigmatizing language. As my awareness increased, I began catching myself saying things like "I was useless today" or feeling the need to apologize for listening to my body: "I'm sorry, I have to take a nap."

Today, I am working hard to drop the self-judgment and choose language that honors my health and all disability communities.

Choosing self-compassion over shame

Becoming more mindful showed me just how critical self-talk is. I was saying things to myself that I'd never say to a friend or even a stranger.

If someone I care about speaks down on themselves, I usually interject with compassion and love. So now I treat myself the same way. When a negative thought pops up, I try to replace it with appreciation and truth:

Listening to what my body needs is wise, not weak.
My worth is defined by who I am, not my productivity.
I am strong, but I don't have to be all of the time.
Rest without guilt.

And every now and then, the spicy side of me reappears. I speak directly to the negative thoughts, I say, "Shame, you are a liar and you cannot stay here!"

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Idiopathic-Hypersomnia.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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AndyMurphy53Member
As one whose physical life has been governed by idiopathic hypersomnolence and severe sleep apnea for almost thirty years, I understand how difficult and frustrating it can be to deal with some people who are free of our challenges. I have lost jobs, job offers, relationships, and even a marriage because of IH. Here is what I have learned: people are free not to choose me or to walk away from me - but I have the right and the capacity to find and associate with people who are not put off by my condition. Nowadays, when I encounter people who see me as “less than” because of IH, I wish them well and then seek out people for whom my condition is not a deal-breaker. I would encourage you to have good cheer and not beat yourself up the way I once did. Just because our bodies may not function in a way that meet some people’s approval, this doesn’t mean that WE aren’t OK. Like the old song says, “Keep pushing on”!
1. Taya AustinMember
 <inline-mention username="AndyMurphy53" user-id="10177681"/> I love it! Choose people that choose you back!!!!
AndyMurphy53Member
As one whose physical life has been governed by idiopathic hypersomnolence and severe sleep apnea for almost thirty years, I understand how difficult and frustrating it can be to deal with some people who are free of our challenges. I have lost jobs, job offers, relationships, and even a marriage because of IH. Here is what I have learned: people are free not to choose me or to walk away from me - but I have the right and the capacity to find and associate with people who are not put off by my condition. Nowadays, when I encounter people who see me as “less than” because of IH, I wish them well and then seek out people for whom my condition is not a deal-breaker. I would encourage you to have good cheer and not beat yourself up the way I once did. Just because our bodies may not function in a way that meet some people’s approval, this doesn’t mean that WE aren’t OK. Like the old song says, “Keep pushing on”!