Journey with misophonia

Most people don’t know about misophonia. I didn’t even know it was what I had until I was 23. Instead, I just thought I was crazy, that I was a horrible person for not being able to handle the normal noises family or friends were making. Most family meals ended with me crying on my bedroom floor after being sent to my room, left to wonder why I couldn’t just get over the noises that caused my anger outbursts—the chewing, the breathing, the slurping, the clinking.

During those lonely hours in my room, I did contemplate what it would be like if I no longer existed, what it would be like to not have to constantly live in survival mode, since the pain of not being able to show love to my family, the struggle in social and academic settings began to outweigh my desire to continue on.

I was 13.

Misophonia is, from what audiologists and doctors can understand at this point, a neurological and physical disorder in which negative reactions are triggered by certain sounds. They say these noise triggers affect the limbic system in some way, involving our natural “fight or flight” instincts whenever a misophonia sufferer hears them.

It’s only really been a couple of years (I’m now well into adulthood) since I’ve started to find resources about misophonia and doctors have been able to at least develop some treatment options. When I was a kid, I would leave the room or try to cover my ears with my hands, and that never went over well with my parents. I was always punished—yelled at or sent to my room when they were too tired of getting angry.

In high school and in college I lost a lot of friendships because I didn’t know how to handle the noises that caged me. I was afraid to admit I was struggling, and afraid of people’s reactions if I did, so I mostly avoided situations, wore earplugs, or, unfortunately, ended friendships. And with the stress of college being what it was, and being so far away from home, I admit I definitely let my anger get out of control sometimes, blaming others without realizing the underlying cause.

As an adult, I’ve seen a couple of specialists who have helped me come to terms with my condition. Therapy and counseling are somewhat helpful, if you need to talk to someone who will actually listen. Thankfully, when we moved to Chicago I started working with an audiologist who actually treated patients with misophonia and was helping to spread the word about the disorder. She made me realize the hard truth—that this is not going away, and that immersion techniques are really pointless. Instead, she pointed me to different ways to cope with noise, including white noise earpiece generators and different types of sound.

There was a time I thought misophonia would crush me. I thought I’d end up living alone in the woods, and eventually turning into that crazy coonskin hat wearing old lady, with, let’s face it, 50 cats and waving a shotgun at the first human being she’s seen in 15 years. I am now much older and married to a man (that’s Billy!) who, thank God, understands this is a real struggle in my life. We have acknowledged misophonia will be a lifelong battle. Indeed it is a constant source of stress and anxiety at home, at my job, and in social situations.

If I’m being honest, I’ve spent so many years just coping with misophonia that I’ve probably developed some bad habits that are now very difficult to break. Unfortunately, these habits—like wearing ear plugs—are said to make a misophonia sufferer’s trigger noises worse over time. As Billy and I grow through this together, I’ll attempt to write about how we live with misophonia and work to overcome the struggle together.

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5 thoughts on “Journey with misophonia

  1. Hi Sarah,

    I’m so glad you have this comfort now. We just got back from the 3rd annual misophonia conference in Chicago, and it was so overwhelming to meet others suffering from this condition. It felt so good knowing I was not alone.

    Like

  2. Kelly,
    Love reading about how you guys are doing. Thanks for being so open & honest regarding a condition I know little about. Love you two.
    Christi

    Like

  3. Kelly,
    Lovely to read about how you guys are doing. Thanks for being open & honest regarding a condition I know so little about. Love you two.
    Christi

    Like

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