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The Misophonia Advocacy, Research, and Clinical Alliance

by Shaylynn Raymond

For those of us who have misophonia and have dedicated much of our lives to advocacy, it has been a long and hard journey both professional and emotionally as we embark on this newly growing disorder. Over the past 10 years I have had the immeasurable honor of meeting so many respected researchers, clinicians, and scientists who are dedicated to ensuring that misophonia is not ignored and is researched. This warms my heart on so many levels. Although I just turned 30, I remember the ambitious 20-year-old girl who wanted to cure the disorder. I was so scared that misophonia was going to take up all my life and ruin what little chance I had at happiness. Of course, it wasn’t easy—but I was able to keep going and learn how to grow and live in this misophonic world. I even got a husband! With that said, much of this is why I attended a masters program in counselling psychology, and even more, why I wrote a book on coping with Misophonia called Misophonia Matters. Misophonia has been the fabric of my DNA from the first time I heard somebody whistle and the pain was so intense I felt weird, sad, and angry.

I think it’s important to point out that over the years there have become certain factions of advocates for misophonia. Getting along has not always been a priority, and while I do not think any of this is due to nefarious reasons, I believe we are all so hung up in our own misophonia and the absolute hell we endure, and sometimes we get caught up in our ideas and ideals on misophonia just the same. I think, though, that if us advocate, researchers, and clinicians worked together we could work for real change on misophonia. Misophonia—for those of us that live it is more than a behavioural problem or emotional intolerance—it rocks the very foundation of our lives causing severe neurophysiological pain. With that said, even if you believe misophonia is purely emotional or behavioural, that pain and what to do with it still remains.

I have fought, argued, and felt like I was at war with members of the misophonia advocacy and research community for over ten years. While I do admit some of this is my fault—I do believe others have had their own parts to play in disjointed advocacy and a race to own the disorder in the eyes of history. It is my proposal that instead of being against one another, we form “The Misophonia Alliance”. This would merely be a group of advocates, researchers, and clinicians sharing resources and pooling together our audiences to ensure that all of our information is getting to the world. I also offer the use of The International Misophonia Research Journal to all other advocates and nonprofits and of course researchers as a beacon of hope for the future—we look forward to having your work presented.

We are not at war with one another. Whether one of our books sells or the next, that is unimportant. What matters is that we are constantly striving to learn more and help those of us who suffer from the condition—the way we cope is less important than a legion banded together to tell the world that enough is enough. There are too many sounds, too many lights, and too much stimuli!

I invite ALL OWNERS OF MISOPHONIA WEBSITES, BLOGS, NON-PROFITS, and RESEARCH CENTERS to become members of The Misophonia Alliance. We will put a page live with links to all resources, and hope that each member does the same. Research helps us all. Awareness helps us all. Coping with misophonia is not a monopoly, it is a miracle!

If you would like to join this initiative—even if you weren’t on the best terms with me in the past, I invite you to, and actually hope and plead that you will.

The alliance will have the following goals:

  • Meeting together to discuss what each part of their community is most interested in
  • Sharing resources if possible
  • Have multi-website run polls to conduct polls that show the community’s feelings regardless of where they interact from
  • Provide a space where individual groups and interests can come together to convene

If you are interested in this project, you can add your website, research program, or business to the alliance now:

https://misophoniafoundation.com/the-misophonia-advocacy-research-and-clinical-alliance/

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