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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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Talking About Misophonia

10/5/2013

2 Comments

 
Thursday afternoon, I finally rejoined Toastmasters. It's been over seven years since I was a member (when I still lived back East), and I'm hoping this step will help get me back in the swing of improving my speaking and leadership skills, which have gotten a littlle rusty over the years since my membership lapsed. Even before the meeting, I knew I was making the right decision to join the group. I got there a little early and one person came up to me to say how much he enjoyed reading this blog. The TreatMaster for that meeting said she was trying to be mindful of my sound sensitivities, so she made an absolutely delicious (and quiet) spice cake.  People were very excited for her to be TreatMaster again... Especially me!

After the meeting, I had the pleasure of speaking with two of the club's board members, as I turned in my completed application. They said they were looking forward to hearing more about my misophonia. What I found interesting is that they also said that they were sensitive to certain smells too, particularly perfumes. One even commented that she is bothered by women's perfumes more than men's colognes. That's when I shared my sensitivity to certain smells, particularly cigarette smoke, and told them about an experience I had nearly a decade ago...

Back when I was still in DC, I took public transportation everywhere. (It was cheaper than owning a car and it actually helped me get to know the area better since I didn't have to pay attention to the road.) One day when I was going downtown to the office, I sat down in a window seat on the bus. This man, who got on the bus a little after me, plops himself in the empty seat next to me. He must have just finished a cigarette at the bus stop because the smell of smoke around him was completely overwhelming. I knew I knew I wasn't
going to be able to stay where I was sitting without gagging, so I politely asked him to let me  get out (like I would do if I were getting off at the next stop) and quietly moved to a seat at the back of the bus. When I sat back down, as far as possible from the cigarette smell, I was shocked when the man then stood up, came towards me, and proceeded to yell at me, calling me a racist for changing my seat. He carried on like that for quite a while, making a complete scene on the bus, until I finally looked up at him and said, "I'm not racist... You reek of cigarette smoke, and I'm allergic to cigarettes." He immediately stopped his ranting and after staring at me dumbfounded for a bit, he went back to his seat and didn't say another word.

It's amazing that no matter how hard I try to be discrete when removing myself from exposure to triggers,
people can still be offended by my actions. Was I supposed to draw more attention to the reason why I was switching seats by being proactive and telling him that his smoke odor was making me uncomfortable, or was it better for me to just quietly ask him to let me out without saying why? I thought the latter was  the better way to go, so that I wouldn't be overtly offending him, but I guess I was wrong. I wonder if he would have stopped making that scene had I not added the comment about being "allergic" to cigarettes... 

Several months ago, I wrote a post about an incident while waiting for a metro train  where I asked a man to stop tapping his ring on the metal banisters, but instead he wound up doing it even more. When I relayed what happened to my aunt, she said that when he asked why he should stop, I should've told him that I recently had ear surgery and the noise of the clanging ring was very painful. I wondered to myself was it really necessary to exaggerate (or lie) like that just for people to be tolerant of a simple request to stop doing something that I'm sure annoyed more than just myself on the platform?

Even though I didn't know about the term misophonia until years after both of those incidents, people seem to be more tolerant when they think a person's discomfort is related to a KNOWN medical issue (even if it's just an allergy). I'm hoping that misophonia will one day be as widely recognized as other medical conditions so that we can be more honest about  the"Why's" without having to exaggerate them.

Well, going back to my conversation with the two other Toastmasters... After sharing what happened to me on the bus, they both seemed to understand that it's not always easy to discretely remove myself from the discomfort of triggers. It will be interesting to see how other people in the club react to my situation. I plan to use my first speech as a way to not only introduce myself to my new club mates, but also to introduce them to what misophonia is. It'll be the first time I've spoken to a (relatively) large group of people about misophonia, so it'll be interesting to hear their thoughts  afterwards... 
2 Comments
Bad Momma link
10/5/2013 09:40:09 am

I'd love to have Misophonia as a widely recognized medical disorder. As a mother of a 12 year old boy with Misophonia, I worry that information about my son and his triggers will get into the wrong hands and someone will test his limits. He is able to hide his disorder at school and when in public. (at home is a different story)

My 15 year old son has a friend who also has miso. This friend had mentioned to classmates a few years back that she hates a certain word (moist) due to the mouth sounds of some of the letters. Classmates would love to test her reaction. They clearly didn't understand what "hate that word" meant.

I would hope if others realized the violent reactions that can be triggered by some sounds or smells, they would be more sensitive to their actions.

I applaud you in your efforts to educate!

Reply
Emlyn link
10/8/2013 01:26:54 am

Thank you for your comment. I know exactly what your son and your other son's friend feels. Kids can be cruel, especially if they know that there's something they can do to invoke a reaction. Even before I was their age, I was teased about the color of my hair ("spaghetti head" a frequent taunt). Then when I was their age, even though misophonia wasn't even a term, kids knew how to play up on my "triggers" - such as when I'd scoot my desk forward to avoid the vibration caused by my classmates resting their feet on the back of my chair. It was like a game to them, to see how far forward they could make me move. If the teacher weren't at the front of the room, I might've ended up at the front wall!

What's sad is when those types of kids don't grow out of being excited to play upon someone's sensitivities as an adult, just because they enjoy the thrill of being able to make someone respond to their actions (like the guy on the metro platform who wouldn't stop tapping his ring on the metal rail). I look forward to the day when misophonia will become more widely recognized by the general public, and when that day comes... Those types of insentitive actions will not be tolerated.

Tell your son and the friend to stay strong and hang in there. That day WILL eventually come. :-)

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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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