This is the #10 edition of our new My Misophonia Story series. This week features Alexandra (27) from the US. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Alexandra, take it away…

Where are you from?

I’m currently based in Brooklyn, NY, but I’ve lived all over the United States.

What do you do for a living?

I’m a documentation editor for a tech company. The big benefit to my job is being able to work remotely, which, has been an enormous game changer when it comes to my general day-to-day happiness regarding misophonia issues.

What are you passionate about / what are your hobbies?

I’m passionate about creating a space for those underrepresented in tech. For a while, had you asked, I would have just said “women in tech,” but there are so many more groups who need a voice and who deserve equal opportunity (and importantly, equal pay). As far as hobbies, for a while I was stage managing for a theater company in NYC. I travel, a lot. Thanks to my remote position, I can work from anywhere. I try to take advantage of that as much as I can.

How old were you when you first realised you had an issue with certain sounds?

The first memories I have of this issue are at age 12, but it’s possible that it was happening much earlier than that (at least as early as 9 or 10). My brother’s loud chewing noises at the dinner table gave me feelings of rage that would lead to screaming outbursts. I would demand he “be more polite” and chew with his mouth closed. I had assumed this was because if I was taught to do so, he should do it too. I didn’t connect the dots about it being specific-sound related until much later, in college. This experience and anger revolved almost solely around his eating habits.

For the record, I have since apologized to him for the many nights of screaming.

When did you first find out it was called misophonia?

I discovered the term in August 2014. I thought I was a freak, completely alone with my sound issues. In my first job out of college, I sat next to someone who had a water bottle habit which drove me crazy. She would pick up the bottle, open the snap lid, slurp for three to five seconds, close the snap lid, and slam the bottle on the desk. This happened multiple times a day, and I reveled the days she was out sick. I listened to a podcast which mentioned it and went on a deep dive. Finally, someone who described exactly how I felt whenever I heard such repetitive body noises.

What are your 3 biggest triggers?

Chewing noises (especially gum)
Throat clearing
Coughing

Do you have any other sensory quirks?

If I can even see someone chewing open-mouthed out of the corner of my eye, I feel my blood pressure rise. My brain reproduces the sound for me, making it much harder to ignore. In one office setting, I turned my computer to ensure that I saw a certain person less who had a hardcore gum habit.

I also cannot talk or think about veins or wrists. I saw an E! True Hollywood Story about some actor when I was 10 or 11 and it went into far too much detail about their use of heroin. I cannot read articles or listen to podcasts or watch movies about shooting up in any capacity. I suppose that’s a wonderful quirk to have.

Have you told other people about your misophonia and if so what was their reaction?

Once I found out that my sound issue had a name, I felt much more confident about talking about it. Before I had the vocab, I’d tell a friend about my water bottle snapping colleague and say, “I know, I’m probably crazy and alone, but she makes me want to scream.” Now, I know why that was happening.

The reaction has been mixed. My primary care doctor pretty much laughed when I mentioned it, indicating she didn’t believe it was a real phenomenon. I’ve had a psychiatrist do the same. My psychologist had never heard of it, listened patiently, but didn’t have a productive way to help other than encouraging me to talk to the worst of the sound-offenders.

I live with my boyfriend and we’ve had a number of conversations about it. For the most part, he’s receptive and very considerate. We always eat with the television turned on, because he knows that silence with food is a big trigger for me. That said, there have also been times where his reaction to a misophonia related incident has been less than ideal. We recently went to dinner in what ended up being a very quiet restaurant next to one of the only tables with other diners. The diner repeatedly cleared her throat and chewed loudly. It got to the point where I started having a panic attack, so I apologized to my boyfriend and put my headphones in. He didn’t understand why I got so upset, and reacted in a way that caused my panic attack to get progressively more severe. Though we later talked about it, I realize that he may never be able to grasp what’s happening when I have such a severe reaction. Thankfully, that is a rare occurence.

No matter how much a person wants to help and loves you, empathy can still be hard. There’s no way to really articulate to him what I was feeling or why I couldn’t just get up and leave.

What’s your funniest/most ridiculous misophonia-related moment?

I have definitely moved or unplugged clocks. If I don’t know where a sound is coming from, I feel compelled to go on a hunt for it so I can at least understand why it’s happening. I wish I had specifics, though I’m sure those incidents looked ridiculous.

What helps you to cope with your misophonia?

I cannot live without a charged phone and headphones. Spotify is my best friend at times, and I listen on full blast when I am affected. I can listen to podcasts (though I always skip the intro to RadioLab to avoid the throat clear) and music at a normal level in public transit as long as there isn’t anyone directly next to me making any of my trigger sounds.

I watch tv with dinner. At one point, I put in earplugs at a family event. Though it didn’t totally mute the sounds, it was helpful, and I didn’t look like I was rudely ignoring folks with headphones. As long as I didn’t have to talk much, I was in the clear.

What are you misophonic superpowers?

I’m definitely more empathetic to people’s stress or triggers than I think I would be otherwise. I know what it’s like to be ignored or laughed at because of misophonia, so I certainly wouldn’t laugh at anyone else because of their “strange” (read: not strange) issues.

It also makes me a pretty solid pedestrian, as I can hear cars from pretty far away. Except for priuses. Damn you, silent cars.

What’s your very best life hack?

Understanding/learning how to use search engines is so important. The better you can use keywords, the faster you will find information. Also, there are lots of ways to filter with advanced search on all of them, so if you can, use it!

Is there anything else you’d like to share with your fellow misophones?

You are not alone. You are heard. You are not a freak. One day, we will be better recognized, and we will have a better solution.

And finally! The quick fire round…

Favourite place you’ve visited:

Krakow, Poland was absolutely magical. It certainly helps that I won a trip, which meant I got to fly first class and take my brother. The city was so clean and so pretty and everyone we met was so nice. Plus, who doesn’t want to eat pierogis all day, every day?

Favourite song:

I cannot pick just one, but I can say that Carole King’s album, Tapestry, is the best album of all time.

Favourite book:

The Bell Jar by Sylvia Plath

Favourite work of art:

I love the East Side Gallery at the Berlin Wall. A symbol of oppression and division has become a symbol of unity and freedom. And that’s beautiful.

5 things you couldn’t live without:

Headphones
A charged music playing device (at this moment, an iPhone)
Chocolate chip cookies
The internet
Financial stability (not a thing, but SO important to me)