Misophonia

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Why Misophonia Sufferers are Speaking Out Against New Research Paper

Part 1 of 2 This is an interview that was done by a member of Misophonia International, interviewing myself, Shaylynn Hayes-Raymond
Can you tell me about yourself and your interest in Misophonia?
My name is Shaylynn Hayes Raymond and I have been an advocate for Misophonia for the last decade. I run Misophonia International and have recently started a nonprofit called www.misophoniafoundation.com. I’ve written books on Misophonia, and personally have the disorder myself. Most of my interest in Misophonia comes from my own suffering and need for solutions for the disorder. I am currently in the practicum portion of my Master’s in Arts Counselling Psychology and will be a therapist by the end of the year.

Why are you concerned about this research?
I’m concerned about this research because I worry about people telling my future clients that accommodations are not helpful, and I worry about the community as a whole. Many sufferers of Misophonia already struggle to get accommodations with a new, less-accepted disorder, so all this study does is muddy the waters and give more of a reason not to accommodate Misophonia. Something I have always been told by members of the community is that they are afraid to ask their loved ones, friends, bosses, and co-workers for accommodations because they are treated as crazy and told their disorder does not exist. I worry that a study saying not to accommodate Misophonia will add fuel to that fire—despite there being no actual evidence that Misophonia is made worse by accommodations. I’m also concerned because the study in question also had co-occuring anxiety disorders in 53% of their participants with Misophonia. Is it not possible that the co-occuring anxiety is what was made worse by accommodations, and completely irrelevant to the Misophonia? I’m even more concerned that Baylor is doing another study that is going to shock misophonia patients with electricity. When is enough enough?

Have you found Misophonia accommodations helpful?
Misophonia accommodations have been lifesaving for me. Without accommodations, my life would be near impossible. At university, I nearly failed out because I could not focus in the classroom. Misophonia already makes every aspect of life harder, so I can’t imagine not having some ways to cope. I am confused what accommodations this study is even talking about. In general, being able to leave the room, alternative methods of schooling (I switched to online), headphones, earplugs, and sensory gadgets like fidgets are all tools that are used for various disorders. Is the study proposing that these are harmful? Is reassuring your child or loved one that they’re not crazy harmful to Misophonia in the eyes of these researchers? I think that assumes that Misophonia is psychological, which considering the fight-flight-freeze part of the brain lit up immediately before the person thinks about the trigger, Misophonia is more likely neurophysiological—so tell me how reassuring somebody makes it worse? Would they also refuse to reassure a trauma victim? The research is getting ridiculous in my opinion. I’d also like to point out that there has been a study suggesting that accommodations for Misophonia are helpful, particularly in a college environment(1). I honestly think it’s cruel to tell people with Misophonia that they should not accommodate. The world is already providing an onslaught of exposure and triggers on a day-to-day basis, so anything that helps us cope—so long as it’s not maladaptive self-harm, should be encouraged.

What is the goal of your petition?
The goal of this petition is to let researchers know that Misophonia sufferers are demanding research that is not only accurate but done with awareness of making the condition better. Studies for the sake of studies can be harmful and muddy the waters for every day people looking for answers. Imagine if a guidance counsellor at a school reads this paper and then rejects accommodations for a student who is simply trying to get by? I’m reminded by the www.usatoday.com/story/news/nation/2023/01/09/tennessee-stud... regarding Misophonia triggers at a school. The goal of this petition is simple—demand researchers (especially those who wrote this paper) listen to the voice and opinions of those who have the disorder when conducting their studies.

Where can readers find your petition?
You can find the petition below

www.misophoniainternational.com/petition-misophonia-is-not-m...

Porcaro, C.K., Alavi, E., Gollery, T., & Danesh, A.A. (2019). Misophonia: Awareness and Responsiveness Among Academics. Journal of Postsecondar

Federal appeals court rules gum-chewing lawsuit against Knoxville school can proceed

A Tennessee student who has a disorder characterized by an extreme reaction to hearing certain sounds, wants to ban gum chewing in her classes.
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Please don't chew near me.

Misophonia. Any other HSPs have this? I cannot stand the sound of chewing, or any sound coming from the mouth that's not talking. And even then, if someone has a whistle way of pronouncing "s", I cannot bear it. I have a flash of red hot rage and I can't control it at all.

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New Episode Alert! 👀 Why No Illness Is Truly Invisible

We know, we know… for a health community, we’re making a pretty bold statement in this episode. But hear us out. This Mighty conversation between @xokat, @chronicallymeh, @harrison-polo, and @skyeg explores what exactly invisible illnesses are, which ones they live with — from EDS to POTS to migraine to misophonia to C-PTSD — and why, if people only paid attention, there are *always* visible signs that someone has an underlying condition. Whether others choose to believe it or not is another episode for another day. Come for the hot take, stay for the reminder that at the end of the day, your perception and experiences matter most.

Grab your headphones, your favorite beverage, and subscribe to Table Talk With The Mighty to hear more topics like this every Wednesday!

bit.ly/tabletalk_10-18-23

#Podcasts #ChronicIllness #MentalHealth #EDS #POTS #Misophonia #PTSD #ComplexPosttraumaticStressDisorder #InvisibleIllness

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New Episode Alert! The Hidden Costs of Health 💰

Living with a health condition is expensive — and not always in the ways we think. In this important discussion led by @skyeg, @harrison-polo, and @chronicallymeh join and deliver some mic drops of their own. From hypomanic spending to pain-fueled shopping sprees to funding sensory sensitivities, the trio explore the tangible and emotional costs of health and disability. They suggest some tips and tools for managing and tracking your expenses, all while sifting through the following conundrum: What do you do when you need a job to pay for insurance and medical bills, but aren’t well enough to work? They don’t promise to have the answers, but they sure do deliver on the “ugh, ditto” factor.

Grab your headphones, your favorite beverage, and subscribe to Table Talk With The Mighty to hear more topics like this every Wednesday!

bit.ly/tabletalk_09-27-23

#Podcasts #money #ChronicIllness #ChronicPain #MentalHealth #Hypomania #SensoryProcessingDisorder #Misophonia

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How do you deal with sensitivity to noise in smaller living spaces?

Recently I moved to a new city and have been dealing with everything that comes with that. New people, new sights, new smells, and... new sounds.

The last part has always been a sensitive subject for me — sensitive because I have misophonia, which can make the sounds of every day life trigger a response in me that some may call unreasonable. To prevent this, I often wear headphones that play white noise when I sleep, or I listen to music constantly throughout the day to offset the outside sounds from affecting me. To say it’s a pain in the butt is incorrect, it’s much more akin to a pain in the ear. Seriously.

The reactions can range from mild annoyance to “get me the heck out of this room, oh my god I can’t take it anymore,” and have even prevented me from being able to enjoy my favorite restaurants if their music speakers aren’t working properly. This seems to have gotten worse as I have gotten older, and I am curious to see if anyone else has dealt with this before and the type of remedies you have come up with to get through the loud times.

#MentalHealth #Misophonia #Autism #ADHD #Anxiety #Depression #DistractMe

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I have to be alone now

With my PTSD breaking into Complex-PTSD last April, due to another tenant's electrical unit making my bed vibrate and loud noise for 4 months, I have misophonia. Misophonia means hatred or fear of sound. It’s a neurological condition in which a person has a strong emotional or physical reaction to sounds like chewing or breathing.

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I'm new here!

Hi, I am here because I have had CPTSD, OCD, anxiety, depression, misophonia and misokinesia for over 30 years and I am still hopeful that some sort of healing is possible. I am also here to feel less alone and hopefully help others while I look for help.

#MightyTogether #Anxiety #Depression #OCD #PTSD

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Do your ears ever scream at your brain?

Hello, I did a bit of searching on The Mighty and did not find anything about misophonia. Here is a definition: “Misophonia is a disorder of decreased tolerance to specific sounds or stimuli associated with such sounds. These stimuli, known as “triggers,” are experienced as unpleasant or distressing and tend to evoke strong negative emotional, physiological, and behavioral responses that are not seen in most other people.”

— from Consensus Definition of Misophonia [2022]*

I live with this disorder and have for many years. Unfortunately, I knew nothing about misophonia until about 4 years ago. My reactions to various sounds, such as loud crunching, crumpling of paper, shoes squeaking on a floor, and someone rubbing on a balloon. This is a sample, however, there are some unexpected triggers that I experience.

My responses to these triggers are immediate, highly disturbing, and cause me to go from being chill to having violent thoughts, usually about the offender or the place it occurs even if I cannot see the offending activity. You can imagine how puzzling these outbursts were for me, and how many people had to deal with the repercussions. Once the sound stops, I almost promptly return to almost chill.

Since I shared this disorder with people close to me, usually during a trigger, they have all become super sensitive to my need to either leave until these noises subside, or they leave the room. I so appreciate this aspect of my tribe.

It is hard for us to live with issues such as this without a clue as to the what, why, and how to deal with it. I often thought I was just being nasty with people if they made a noise I did not like. No, that was not the case at all. Accepting this as a real thing, and not feeling guilty it truly helpful. As with all issues that are evident to others, it might be harder to resolve, however, I did after learning more about it and releasing myself from shame.

If you suspect you might be dealing with misophonia, please take a look at some resources. Misophonia as a disorder is not always accepted, even by many healthcare professionals.

Here is a link to a good website on this topic:

www.soquiet.org/whatismisophonia

#misophoniamatters #misophoniamatters #Misophonia

What is Misophonia? — soQuiet :: Misophonia Advocacy

Misophonia is a misunderstood multi-sensory disorder.
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