Lately there has been an increasing amount of press coverage for Misophonia. As an advocate who started her journey with a fight for awareness, I should be overjoyed. Isn’t this what I’ve wanted? Isn’t this what the fight is for? Well, no.
Raising awareness is more than a fight for recognition. It is a fight for concise, accurate, and fair reporting. It’s a quest through a perilous terrain, seeking (if nothing else) respect. How does one garner respect when the media – the public’s ‘beacon’—is leading people astray? The answer is simple: one doesn’t.
Why is Misophonia being unfairly represented? It’s cool. People are interested in new, rare, and strange conditions. The information being presented is little more than idle gossip. The media and public figures see this condition – and they laugh. You don’t believe me? Look up Hoda and Kathie Lee’s intolerant NBC segment. ‘Miso-phoney’? Thanks a lot, TV.
A lot of Misophonia sufferers are unhappy with the press. Some are content that we’re being mentioned at all, having felt suffocated by a disorder that ‘barely existed’. Often times we are like ghosts – waiting behind the curtain, unable to be freed, unseen. An intolerant attitude is not the way to liberate those with the disorder. We are seen as those with “chewing rage”; we are “nasty”, “angry”, and “need to get over it”.
Each and every time this condition is mentioned in passing as a joke – each time a meme is shared – each time we’re put on the backburner as ‘crazy’ or ‘intolerant’, we’re falling further down a well. The public, in all of their ignorance, does not realize that we’re truly suffering. The effect of such shaming is more than feeling upset; it is truly a life-changing experience. So how do Misophonia sufferers take these negative things and turn them into positive opportunities?
It’s important that we share accurate information. We can’t continue down this path of sharing every article that’s unclear and accepting it as fact. We need to be proactive and correct ‘reporters’ when they’re wrong. We need to understand that the world doesn’t change in a day – and it doesn’t change without action.