Confusion. If I were to choose a word that perfectly explains the world of misophonia, advocacy, and the pursuit of answers (particularly on Google), 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 people looking for answers are able to find accurate medical information. Instead, they are met with links to so-called ‘experts’ that barely understand the disorder. What do they seem to understand? Cash.

You see, whenever a new condition comes about – there’s always a character who thinks they can make a fast dollar. The ‘cures’ and ‘treatments’ are based on their own research – and because they got to the party early, they’ve 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 people with misophonia 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 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 often 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 rattle snake – for people living with misophonia, regular sounds become this rattle snake. 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.

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 every day 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. Oftentimes people diagnosed 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 it, chances are, that you do have a form of auditory over-responsivity. An audiologist, doctor, or psychologist can help confirm this, but since 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.

Still Confused? On August 21st, Dr. Jennifer Jo Brout will be hosting a webinar for patients, clinicians, journalists, researchers, teachers and parents that provides a basic understanding of misophonia and helps differentiate between myths and facts.

What’s most important for people living with misophonia is that they know they are not alone, their condition is real, and it’s not “all in their head.”