I have been an advocate for misophonia for 10 years. This journey began when I learned the name misophonia from my cousin Ashley Bonin. Ashley is a very intelligent person so she was quite good at figuring out what misophonia meant. After this discovery, I joined several groups on facebook and got caught up in the weeds. I met several key players around this time: Dr. Jennifer Jo Brout, Joyce Cohen, Jeffrey Gould, Paul Dion, Dr. Marsha Johnson, Tom Dozier, and more.
There was a lot more inner-fighting between advocates than you might imagine. Dr. Johnson in particular was outspoken about my involvement in advocacy and even made a very long public letter trying to “set her side of the story straight”.
For my part of what’s to come, I will tell you that I was a fresh college student learning Political Science. I was a viper looking for a cause, and having misophonia was the perfect way to put this all into motion. So—I decided to write a book on misophonia. During the first iteration of this book I asked numerous members of the community to contribute. For a while things went pretty well. There were even times when we would work together, unbothered by the lingering resentments that would soon follow.
Since misophonia was so early in its days and research pretty much was at a standstill, most of the advocates were essentially picking an idea or theory they like and holding onto it for hope and all dear life – Kind of like the scene where Rose is on the board in Titantic.
I think that some of this fighting came from a genuinely good place. Each person had their own lived experiences and reasons for being a misophonia advocate. What I failed to see at the time is that you can’t control everybody and have a centralized message. Instead, research (and especially on the brain) is something that must be parsed out over time and through different disciplines.
The parts of this that make it a horror story are probably the long nights fighting about misophonia; of debating whether or not to support an advocate or conference if somebody is there we did not believe in. Behavioural analysts and hypnotherapists came up a lot, and I do now see why this shouldn’t have been as big of a deal as I thought. If clinicians and clients want to try these interventions, that is within their rights.
Of course, some of this animosity seemed to come from a rat race of everybody wanting to get information to the world and have our information be what’s seen. These were early days and we were all fighting google algorithms and hoping some reporter was willing to do a deep diving piece. I think the worst part of all of this was that instead of getting along, we became more polarized. Things were tense in the community at whole. On Christmas eve one year Jen and I received death threats from anonymous reddit users, over what, a $2 download!
Many cruel things were said— and a lot of them were said by me. I had a view that if you weren’t pushing research forward than what business did you have doing anything? Then I became a LPC-C and realized that it is not on one person or discipline to change the world. We all play our parts. I hope this horror story in the future can instead become a source of inspiration to the misophonia community to work together and make waves in research, awareness, advocacy, and understanding.
I want to personally apologize to all of the advocates, researchers, blog owners, and otherwise well-meaning persons whom I’ve attacked with this rigid world view. I hope we can work together and create an alliance of hard-working, compassionate, empathetic, advocates that I know we are.
S
