RACHEL BARLEY

IN HER OWN WORDS

Hello, my name is Rachel Barley and I wanted to introduce myself to the misophonia community. I have sensitivity to certain sounds, and it’s called misophonia.

My misophonia started when I was about 8 years old. It was first triggered by my Dad’s eating with his mouth open. I remember feeling a rage so strong it scared me. I used to get very angry. I’d shout at him, storm out, and sit with my fingers rammed so hard into my ears that it hurt. I’d stay silent and cry in desperation. The older I got, the crazier I felt. I remember talking to my Mom about it a few times. I described it to her as feeling like the incredible hulk.

My Dad’s eating still bothers me. But I’m able to give him a “joking but real” look and he laughs and stops. He used to make sounds on purpose when I was younger. At that time, no other sounds bothered me. Except those made by a friend and her family who were, and still are, notorious for eating with their mouths open. That particular noise is the one that drives me most bonkers. It’s also a visual trigger for me as well. If I can see someone eating with their mouth open, even if I can’t hear it, I still feel rage.

As I’ve gotten older, my triggers have gotten worse. Some have gotten more intense. But, now I know to keep everything in because I know it’ll pass. I’m lucky because I find I can relax soon after a meal is over. But the anticipation before meals makes me a wreck and also makes me feel anxious.

One of my worst triggers now is my Mom. She doesn’t eat with her mouth open, but she talks with her mouth full. I could punch her in the face. I would NEVER actually do that. And if I did, I’d feel guilt forever. But, but that’s the level of rage I experience. I cannot look at her while we’re having a meal. She also puts huge amounts of food in her mouth and when she does this it sends me over the edge.

She suffers from depression and anxiety etc. as I do. which makes her do a lot of visual things that drive me insane. She twists and twirls everything she can get her hands on. Tassels on blankets, her scarves, anything she picks up. She also “waggles” her feet and I cannot watch her doing this.

On top of that she sniffs ALL. THE. TIME. Again, at times, I feel like shoving a pile of tissues up her nose! I ask if she wants a tissue and her reply is that there’s nothing to blow. I keep quiet but want to ask her why she’s sniffing if there’s “nothing there.”

I sometimes feel like a horrible, intolerant, crazy, and awful person. But finding out that misophonia actually exists and that this “thing” I feel is real has helped a lot. I still don’t understand it and I’m looking forward to this journey to discover what I can do to help myself.

I’m very lucky that I don’t get annoyed by sounds like music, beats, and fireworks. Unless they’re not my own sounds and go on for an extended period of time. If there’s a car outside playing music I start getting cross if it’s not turned off quick enough. But I don’t know whether this is misophonia or whether it’s a general annoyance. I got irritated last night because at 1:30 a.m. (I was in bed) people were outside talking and laughing. It’s like a grating feeling isn’t it? It immediately gets on my nerves.

My misophonia has affected my life more than I’d realized. It ruins family gatherings, Christmas times, birthdays, and cinema trips. It’s the reason we live in a detached property in a very small village in a cul-de-sac with little traffic. There are lots of older people around us who don’t seem to make very much noise at all. It leads us to book holidays in only detached properties, cottages, and villas. If we do stay in a hotel, I always check the reviews for sound levels and I always ask for a quiet room. Our first house together was a terrace with dreadful neighbors. I used to cry at 5:00 a.m. in the morning when I could hear them!

The funny thing is people with misophonia aren’t perfect. We too make noises. I wiggle my feet. I make crunching noises with my mouth when I’m eating crackers. I cough. I sneeze. I play music in my car. My husband points this out sometimes and it makes me feel even worse about my condition. This is a physiological condition, right? I can’t help how my body reacts to these sounds and visual triggers. I wish I wasn’t like this. I would love to live a “normal” life and not have these things affect me.

I also think there are many components to misophonia. Everybody is different, and no two people with misophonia are the same. When they first discovered depression, OCD, and PTSD, people didn’t believe it or understand it. It was a case of “snap out of it,” “cheer up,” “you’re just lazy,” and “yuppie flu.”

Hopefully, with more research and understanding we can learn to help ourselves. In the meantime, I am so glad to have found this group and know I’m not crazy. Knowing it’s okay to want to protect myself from triggers helps me a lot. Now I know that it’s simply my body reacting to triggers when I feel the way I do.

As I said, I wanted to introduce myself. Now, I’m hoping people will start giving me some ideas for coping with different situations. I want to start looking forward to and enjoying family gatherings. I want to stop being frightened of them. I’m very interested in sound-limiting ear plugs. People talk about them, but the cost!

Nice to “meet” you all, thanks for reading my story.