Confusion. If I were to choose a word that perfectly explains the world of Misophonia, advocacy, and the pursuit of answers (particularly on Google Search), the word I would choose is without a doubt: confusion. The waters are often muddied by misinformation. Like all things in the modern world, Misophonia has been branded – however, this branding has been skewed and doesn’t necessarily reflect the condition. Since Misophonia is a new condition, it is ever-important that persons looking for answers are able to find accurate medical info. Instead, they are met with links to so-called ‘experts’ that barely understand the disorder. What do they understand? Cash.
You see, whenever a new condition comes about – there’s always the guy who thinks he can make a fast dollar. His ‘cures’ and ‘treatments’ are based on his own research – and because he’s got to the party early, he’s saturated the “market” – as though Misophonia, a medical condition, is a market. I wish my words were simply hearsay or formed from my own biased opinion. Unfortunately, there’s firm evidence to the contrary. In an article for the New York Observer, Dr. Jennifer Jo Brout details her experience with a psychiatrist.
I asked the author of many of these studies why he and his colleagues were doing therapy for misophonia when there was absolutely no consensus as to what the disorder was (and when none of their therapies had been trialed). During his transparent explanation, he slipped up and referred to misophonia sufferers as potential “consumers”. Funny, I had never quite thought of patients as consumers.
As I have explained in an article on HuffPost, “Dr. Pawel Jastreboff, who coined the disorder in 2001, has worries about doctors jumping the gun and moving on to treatments so fast. He asserts that when it comes to the toted treatment methods that, “we do not have any clear clinical data.” Since there is not enough clinical data, this furthers worry when it comes to misophonia providers.”
So – now that we’ve established that there’s confusion about Misophonia… what exactly is it? Though there are few studies that have been published, it’s been established that Misophonia is most-likely a neurological condition in which the amygdala is having an over-responsive reaction to otherwise normal auditory and visual stimuli. It’s not simply a rage disorder, nor is it ‘sound rage’, or ‘chewing rage’. It is a complex sensory disorder that impacts the brain’s ability to process information. The emotional reaction, which accompanies the disorder comes after the initial physiological response.
It’s important to differentiate that the anger, anxiety, confusion, and sadness that are linked to Misophonia come after the initial response. Misophonia is not simply anger or rage at certain visuals or sounds – these reactions come after our body fails to understand properly what is and what is not a threat. Imagine that you were locked in a room with a rattlesnake – for persons with Misophonia, regular sounds become this rattlesnake. We are unable to shake the panic, the fear, and the fight-flight response – because our brains do not understand that a threat is not present.
What’s most important for sufferers of Misophonia is that they know that they are not alone, their condition is real, and they’re not crazy!
Since there is no official diagnosis, knowing you have Misophonia usually comes from identifying that you, or a family member have an over-active response to everyday sounds. This is more than mere anxiety or anger – the person may be sweating, feel like they have bugs crawling under their skin, tightness, and a physiological ‘jerking’ sensation as soon as a sound happens. Persons with Misophonia seem to have symptoms that worsen over time, and exposure to these sounds causes the experience to become worse – sensory information is cumulative and you cannot simply ‘get used to it’.
If you think you have Misophonia, chances are, that you do have a form of auditory over-responsivity. An audiologist, MD, or psychologist can help confirm this, but as there is no diagnostics criteria or treatment, there is little else that can be done by them. Coping techniques, sensory diets (which would be implemented by occupational therapists), and white-noise generators may be beneficial.
Currently, the International Misophonia Research Network operates a site that lists coping providers. There is one listing for Canada, but the list continues to grow. What’s most important for sufferers of Misophonia is that they know that they are not alone, their condition is real, and they’re not crazy!
About Shaylynn Hayes
Shaylynn Hayes is a 23 year old writer, advocate, graphic/webdesigner, and student. She is the Editor-In-Chief of Misophonia International and Author of Full of Sound and Fury: Suffering With Misophonia. I am also the founder of www.lovenotstigma.com an advocacy project that aims to share mental health stories, lift up advocates, and create a world that promotes love instead of stigma. Misophonia has created trials and tribulations, but it’s also changed her life in good ways. It is due to Misophonia that she ended up switching schools, but it is also the reason she has been able to focus her voice and try to help others that struggle with the disorder. Alongside Dr. Jennifer Brout, Shaylynn runs the Newssite and adovacy site, www.MisophoniaInternational.com. Most recently, Shaylynn founded www.thoughtful-gaming.com, a resource for disabled gamers to find groups for their favourite video games. The site focuses on Research, Coping, and Awareness for the disorder. Shaylynn has also been actively involved in the International Misophonia Research Network, founded by Dr. Jennifer Brout. What used to be a life-ruining disorder has become an interesting and defining adventure that has proven that the things that are “ruining our life” may very well be creating a new, interesting life in the place of the old.