Living with Misophonia

“Mom, tell Mark to stop breathing.”

“Mark, stop breathing.”

Mark is my younger brother. We were sitting in the back seat of the car as mom was driving. I can’t remember how old we were but I do remember that the sound of his breathing made me want to hit him, and sometimes I did.

No one understood. I didn’t even understand myself.

All I knew is that the sound of someone breathing, and many other sounds, made me instantly angry. Like really, really angry.

I would become fixated on the sound. Rage would build, panic would set in.

Whatever I was doing at that moment was no longer important as the only thing I could focus on was getting that noise out of my head. I felt like I was going insane.

These were regular feelings for me as a child growing up, throughout my teens, and they continued into my adult years. I never spoke about it.

But along the way, something happened that created a spark for me to speak up.

At age 37, my life changed from this one particular moment.

I was studying to become a schoolteacher at Acadia university. While sitting in an inclusive education class, the professor was discussing hearing disorders in children.

As she moved through various conditions, she started to talk about how words and certain sounds can be misinterpreted by the brain. A person can experience sudden confusion, panic, anger, embarrassment, fear and this list goes on.

As she continued to talk more about this, I sat up straight in my chair. A rush went through my body. My heart was pounding, my mind was lit.

After class, I hung back and told my prof a little bit about what certain sounds do to me. This was the first time I ever heard the word ‘misophonia.’

As I stood by her, listening to her explain the condition, I started to cry. I was shaking. She hugged me. She told me there is help for me. We talked for a while.

It was at this very moment, the way I had been living with misophonia began to change.

All these years…all the suffering in silence…the pain, the thoughts in my head about myself, the confusion, the embarrassment, the shame…

I’m not a hateful person.

There’s a reason for my rage.

This is a real thing and I’m not the only one suffering.

Finally, I could seek to understand.

But, then this happened…

As I started to tell others, I began to feel more ashamed than ever before. I actually started to regret my discovery.

Was I better off not knowing that I have misophonia? Was I better off keeping it a secret and living a life of suffering in silence?

When I tried to explain my condition, I felt like no one believed me. Their reactions made me feel like a whacko and that it was all in my head.

People rolled their eyes, or told me to just “deal with it.” Some made snarky comments like, “Oh yea, that annoys me too but I just block it out.”

NO. I’m not just annoyed and I can’t just block it out. That’s not how this thing works!

I felt so shut down.

But, here’s the thing about me…

I’m a fighter. I am not one to lie down and let the world run over me. I’ve survived a lot of other trauma in my life. Why would I give up here when I haven’t given up on any other aspect of my life?!

And so began the real journey to finding my peace, learning how to protect it, and speaking up about it with confidence instead of shame.

Also, this is where the journey began to learn how to talk about my misophonia without making others feel like they are the blame for my pain and suffering. Maybe this was where I went wrong before.

When I first started to talk about it, I was filled with so much hurt and anger and I felt that I had validation for my behaviour. I think I came across as blaming others for my pain and suffering.

If I ever wanted to be heard, understood, and supported, I had to find a better way to behave and communicate effectively about my misophonia.

So here I was, facing the additional burden that I was no longer just challenged by sounds.

Not only was I challenged by having to develop personalized coping mechanisms so I could live a life without feeling trapped by everyday normal sounds…

…but, also…

…I was challenged to find my peace within, learn how to protect it with confidence, and stand up for myself in a non-blaming way.

I had to let go of feeling ashamed. That was, and still is, a struggle.

These challenges will NEVER end. There will always be something else. And accepting that reality was the ultimate challenge to conquer first.

The world was not going to change for me. I was the one that had to change…for me.

And that brings us here. For me, part of that change is writing this book.

I am now 50 years old, 13 years after discovering I had misophonia, but a lifetime living with it.

Within these pages, I’m going to tell my story in the most vulnerable and honest way of what it was like before, during the discovery, and after the discovery of having misophonia. Everything in this book is true. It’s my story that no one else can write.

I will take you on my emotional journey to how I finally learned to escape the sound trap and live a life more freely, and with confidence and kindness. You will discover how I developed my personal coping mechanisms, better communication to create a greater understanding and awareness, and most important of all, how I took control of misophonia instead of letting it control me.

My hope is that somewhere within this book, those living with misophonia can find inspiration to create their own peace and learn how to protect it.

I also hope those that do not have misophonia can gain a compassionate understanding in order to provide better support for those that do have it.

Finally, I would be lying if I didn’t say that I’m also writing this book for me, to help me find a deeper understanding of myself and know that it’s okay to live my life this way.

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Disclaimer: I am not a medical expert. I am not an expert on misophonia. This book is not intended to replace therapy or taken as any kind of treatment for misophonia. Nothing scientific is contained in this book. It’s my personal story that only I can write. I have had a medical diagnosis of misophonia. I discuss the coping mechanisms that I created for myself. While I am an expert in fitness and wellness, all and any information I share on these topics comes from my personal experience and is intended for entertainment purposes. If you decide to try any of the coping mechanisms that I discuss in this book you do so at your own risk. By doing so, you release me of all liability. Not all coping mechanisms work for everyone. Every person with misophonia experiences it differently. You should always discuss any type of treatment you wish to pursue with your doctor first.