This is the #27 edition of our My Misophonia Story series. This week features Raelynn (32) from the USA. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Raelynn, take it away…
Where are you from?
What do you do for a living?
I do costuming, set building and prop making for film.
What are you passionate about / what are your hobbies?
All things creative, I always have a project in the works. I really love getting to be in nature, swing dancing, hiking and board gaming.
How old were you when you first realised you had an issue with certain sounds?
I was 13 when it starting being a big problem, but I didn’t recognize that I was more sensitive than most till high school.
When did you first find out it was called misophonia?
About 5 years ago, like many have said, I couldn’t stand how disruptive it was to my life and decided to google search sound and sensory sensitivity. I found a research survey that was being conducted somewhere in Europe, the questions in it actually triggered memories and it helped me understand the root of it all.
What are your 3 biggest triggers?
Loud chewing (or any other mouth noises), when I can kind of hear something, but not all the way (loud headphones, someone watching a video 10 feet from me etc) utensil scraping.
Do you have any other sensory quirks?
Finger biting, hair twirling, pacing in front of me.
Have you told other people about your misophonia and if so what was their reaction?
Once I know I’ll be spending considerable time with someone I let them know. At first people just thought it was weird, but my GOOD friends became understanding and would do little things to help, or at least not take it personal if I get overwhelmed.
What’s your funniest/most ridiculous misophonia-related moment?
When I was in middle school I baby sat my siblings 7 and 10 years my junior, right when puberty came along and when it first appeared. My brother would eat so loudly that I would blow up and yell at him “If you’re going to chew like a pig, I’ll put your plate on the floor so you can eat like one too!” I still feel pretty bad about that.
What helps you to cope with your misophonia?
-I carry earplugs everywhere I go (eagerly awaiting the Knops.co plugs I backed on kickstarter)
-Communicating to people is SO important, letting them know beforehand so you don’t experience the shame and guilt when getting triggered in front of them for the first time
-CBD, if I am high anxiety I am triggered much easier, I only use it if I’m already experiencing anxiety before going into a social environment.
-“Going to the toilet” so I can have a moment to sit, close my eyes, cover my ears and breath, letting my brain come back from it’s “fight or flight response”
-Watching movies at dinner
-Headphones in case I need alternative stimulation instead of just muting
What are you misophonic superpowers?
It made me more empathetic to invisible ailments, TRULY believing someone’s pain based on their word. It has shown me who my real friends are, if they don’t care or don’t believe me then they aren’t worth my time. The people who at least TRY really made me see how much they care about me.
What’s the single most useful piece of misophonia related advice you’ve learnt?
I’m not alone. Before I found the study on it, I honestly thought I wouldn’t be able to be in a relationship, I felt like a freak. Knowing that there are many who deal with this, and that it’s likely due to trauma or a brain disorder made me feel like I could get better. And I did a little bit, because experiencing shame, is in itself a traumatic event, getting triggered always made me feel so ashamed that it exacerbated the response. Now it’s something I deal with, not something I’m messing up. YOU ARE NOT ALONE!
What’s your very best life hack?
Send more hand written letters via Post. It’s a super inexpensive way to show someone you care, it never fails to make the receiver feel special and nostalgic.
Is there anything else you’d like to share with your fellow misophones?
You are not your diagnosis. This is something we have to manage, like an annoying roommate or a difficult job. Allow people to know what you’re going through. Be mindful of how you’re doing and be ok with letting people know how you’re managing. Imagine miso is calling you on your cell, “excuse me everyone, miso is calling, I’ll be a few minutes while I take this in the other room”. Sensory sensitivity can be very isolating, but we need people in our lives, it takes honesty and venerability to let people understand it, be brave and let them in!
And finally! The quick fire round…
Favourite place you’ve visited:
Bangor, Wales UK. (when the train rolled away, it was the first time I heard silence and it was AMAZING)
Over the Rainbow
This is an impossible question
Favourite work of art:
Also impossible, but Art Nouveau is my favorite art movement (the perfect blend of the Arts and Crafts movement and Japanese art)
5 things you couldn’t live without:
1. Morning Coffee
2. Green things
3. Creative outlets
5. Fur babies