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Kathie Lee and Hoda’s Treatment of Misophonia Is a Reminder Why Advocacy Is So Important

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While Kathie Lee and Hoda mocked misophonia nearly two years ago, I still feel the burn of their words. How could I not? In this modern-day era, their voices still echo throughout the chambers of my mind, and cyberspace. Just a quick Google search away, the segment “Munch munch: Do certain everyday sounds drive you nuts?” leaves tears in my eyes. Despite a petition after the fact by people with misophonia, the video remains live. This video, which is crass in nature, has always lingered like a shadow.

Misophonia is a neurological disorder that causes a fight/flight/freeze reaction when faced with otherwise normal audial and visual stimuli. In short, this means things such as whistling, tapping, chewing, leg shaking and coughing can cause a severe emotional reaction.

Perhaps I should toughen up. I should get over it. This happened on August 20, 2015, so it should no longer be relevant. To me, it is just as relevant as the day it was filmed. 3,210 voices signed a petition saying this was not OK. Mere drops in the water. Our voices were silenced because we are not a majority. As this a rare disorder, we haven’t had the chance to speak for ourselves. We have been mocked, berated and chastised by the media as “those people that feel rage when they hear chewing.” We are much more than that. According to this video, we are not. We are gossip-worthy, entertainment, we are a spectacle. So long as videos like this are allowed to stand higher than our voices, it remains relevant.

In a world where the media is allowed to be a spectacle, where the President of the United States can mock a disabled reporter, I am worried I am grasping at straws by speaking of this injustice. I worry daily that our message will not be heard. Misophonia has caused pain to people and families. These stories have become the backdrop for click-bait and entertainment, and on the better days, we remain completely ignored by the press. Even news about research is met with follow-up stories that care little about break-throughs, science and the validation of a disorder that many believed to be “made up.” No, it seems to me what they care about is the strange affliction of “chewing rage.”

Kathie Lee and Hoda have a voice. They have a television show that reaches audiences across North America. I believe they have lent their voice to stigmatization, to the opposition of kindness, compassion and health awareness. For the sake of entertainment, they have mocked misophonia.

I worry not because these words have been said. I worry because in the world we live in, bigger is often thought of as better. Unfortunately, for those of us struggling in the corners of medicine, with disorders that are unknown, our platforms are smaller. Often, we may feel as though we are shouting in the wind, looking for a sign that we are more than a story. We are people who are struggling with a life-altering disorder. We are struggling every day with isolation, anger, fear and confusion. We are struggling because our minds do not match our environments. We are struggling because we are unable to adapt to the world around us.

It feels like the media has turned its back on us. There are also under-researched stories about misophonia that link back to individuals I believe wish to profit off the pain of people with misophonia. Giving a voice to the wrong sources can have devastating impact on disorders that are unknown. Dr. Jennifer Jo Brout, an advocate for misophonia and founder of the IMRN (International Misophonia Research Network), spoke of this in an article featured by the Observer.

“I’ve seen a lot of BS treatments for many conditions, but the difference here is that these fraudsters monopolized this disorder. They got to the internet first, before academia and before any doctors, and positioned themselves as experts. When you Google misophonia, you get them. When you read mainstream articles about misophonia, you see their treatments and groups referenced in the articles. Instead of informed doctors or researchers, you find people promising “cures” to desperate sufferers. I know people who have been have bilked out of over $10,000 (and more), never mind the emotional cost incurred.”

Advocates for all disorders should be horrified by this behavior. There was once a time when depression, anxiety and many other disorders were unheard of. There was once a time when it was “OK” to say cruel words on television about persons who are disenfranchised. If we ignore ignorance and cruelty, I am afraid we are riding a slippery slope. Time is a fickle thing. Every decision we make can lead us right back to past moments we thought were left behind us. If we are not careful, we will live in a time where this is OK.

I have tears when I think about this video because I am fighting every day for the opportunity to live my life normally. I am fighting to function in a world that constantly berates me with stimuli. I am fighting against a society that is unequipped to understand my disorder. I face doctors who do not understand. All of us with this disorder have faced parents, teachers, medical professionals, and have been left with more questions than answers.

There is hope for misophonia. Groundbreaking research is establishing us within the scientific community as something other than a misprint. Through science we are obtaining the validation the public has yet to give us. Through science, we have discovered that we matter. I encourage writers who cover misophonia to focus on this science. I encourage journalists to embrace the wonderful researchers that go against the grain and make new discoveries, even in an intolerant world.

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Photo source: TODAY Show video

Originally published: June 9, 2017
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