I’m an advocate for the disorder Misophonia. Lately, you may have seen it in the press. I should be happy. I should be jumping for joy that my disorder is being researched – and even more joy that it’s been featured around the world by the media. Unfortunately, I’m too close to all this. I’ve talked to the researchers, and I know what their results are pointing to. I’m ecstatic on that front – but I am chilled by all the press.
Yes, chilled. Every time a new article is published on Misophonia – I panic. I do not want to lesson or cheapen disorders like PTSD, but each time I see a “Google Alert” or a new link pop up – I lose my breath. I almost cry. I know that when I click that link, there is a 99% chance that what I find is going to be the opposite of stigma-free awareness. The press on misophonia has been spectacular – it has focused on cheapening the disorder, an “interesting”, “weird” fact that’s little more than a circus.
Because I have misophonia I am always petrified by the improper mentions in the press. Research results are skewed, and there is always the “complimentary sufferer” whose life is put on a pedestal, to be mocked. While the news agencies may believe they are telling our story, all I see is the same rhetoric over and over. Person bothered by sounds, wow, ‘by the way there’s no cure or consensus’. This type of journalism may as well stay where it came from.
Perhaps I sound petty, but, I am used to reading news articles that marvel of the spectacle of “chewing rage”. Misophonia is not chewing rage, nor is it sound rage. It is a serious disorder, in which sufferers face a fight/flight/freeze response. It has ruined marriages. It has ended college careers. It has isolated families, and it continues to be a cause of pain for all those it has touched. The last thing we need is to fight the media in our struggle for a cure.
As an advocate I am becoming more polarized. The more I speak out the more I realize that the voices of others like me needs to be brought forward. The more advances we make with research, the more I realize that the message needs to be carefully constructed so that it is not skewed. What is a major disorder has been reduced to a bullet point in someone else’s rhetoric. At every step of the way, advocates are jumping over hurdles. There is more than stating our position, we must actively notice the wrong-doings against us. This, while fighting our own ailments, is emotionally taxing. Advocacy is not an easy job. We do this because we have to. For ourselves, and for those around us that are impeded by the causes we fight.
Research is growing. The findings of Dr. Sukhbinder Kumar are a tremendous leap forward for sufferers that have been told their disorder is not real. The IMRN (International Misophonia Research Network) has been advocating for more research.
The fight for research has several different problems. While we are growing awareness for misophonia by having our research featured in the news, many follow-up stories are growing like wildfire, the latest blazes having little in common with the first burn mark. While Misophonia is mentioned more and more in the press, the real story, that researchers are collectively working to alleviate a disorder, and come together to find answers, has been watered down. What is left, is a spectacle that is little more than news organizations using our disorder for web hits. When these sites steal away from the conversation, by coming front and center, real advocacy is lost in the mix of voices.
The sound of misophonia’s suffering is lost in an endless stream of voices, voices that have not added a unique perspective to the conversation. Voices that are not asking the right questions.
I am happy that misophonia is being researched. I am happy that my fight alongside the IMRN is gaining fruitful results – but in regard to the media – I am tired. I am tried of checking google and twitter and worrying what I may find. I am tired of fighting tooth and nail for a backlink or a mention that could mean the difference between research funding. I am tired of fighting every day of my life with a disorder that has been mocked, terrorized, and used as a “fun fact”.
I’m an advocate, and at one of the most important times for my fight, I am losing sight. I have been beaten down, but I know that it hardly matters. I must continue to fight. Advocacy is not a particularly rewarding field when it comes to notoriety, but it is the only weapon we have left against a system of oppression and stigma. I am an advocate, because I want to ensure the voice of my disorder does not get lost.