How Do I Get Some Help With My Misophonia?

I have heard many people refer to misophonia as a new disorder. However, as those with misophonia know, it is not a new disorder. Rather, it is a disorder that needs recognition and understanding across medicine, neurology, psychology, and the public.

Adults with misophonia, and parents of children with misophonia search the internet for information, support, and hands-on help. The internet is both intimate and vast and finding information can be confusing, and disheartening. Therefore, it is essential to know who your advocacy organizations are and what they can do to help you.

As most people with misophonia know, advocacy for the disorder is greatly needed. There are different types of advocacy, of course. One can advocate for oneself (which is very difficult in the current medical system), one can advocate for another person, and/or one can advocate changing a system. Perhaps more important, advocacy is also about "helping people find their voice.” Today, I interview Cris Edwards, founder of the misophonia advocacy nonprofit soQuiet (who is truly helping people find and express their voice).

Jennifer: Cris, what moved you to start soQuiet?

Cris: As someone who has struggled with misophonia for decades, I feel that there is much more that needs to be done than is currently happening in terms of misophonia advocacy. Misophones are misunderstood, suffering, and don't have a voice of support, and I have therefore made this an important life mission.

Jennifer: I think it is interesting to understand the more personal reasons someone is driven to advocacy. Would you mind talking about this?

Cris: Both sobriety and the pandemic drove me to advocacy. I began living a sober life six years ago and this changed everything for me. I learned to redirect my focus outward toward helping others, rather than inward. As I saw people online in misophonia forums posting about how they were struggling, losing hope, feeling alone and desperate, without seeing solutions, I knew that I wanted to provide hope.

Jennifer: And what about the pandemic?

Cris: The pandemic truly shifted things for everyone, and misophones were uniquely affected. Since I had been working in the theatre before COVID, it was a perfect time to redirect my efforts toward soQuiet. I had been thinking about it for a long time. This seemed like the universe letting me know which direction I should go.

Jennifer: Please tell me more about about soQuiet.

Cris: In our first full year as an organization, a lot of our efforts were aimed at helping advance research about misophonia. We've launched some solid programs in that realm and recently joined with the International Misophonia Research Network [IMRN] which is a think tank of people who are pioneers in studying misophonia across many fields and continents. Yet, since research takes a long time, we are highly focused on what we can do right now to help. How do we help those with misophonia manage today? That's why soQuiet is digging into advocacy and support.

Jennifer: Can you give me one example of how your organization is doing this?

Cris: We have been working for months on a peer support group program. This is a comprehensive toolkit and platform for misophonia peer support, something that hasn't been done at this level before.

Jennifer: That is fantastic and will be so helpful! I know that you are a 501[c]3 charity organization and that you are all volunteers. How can people get involved?

Cris: There are many ways. We have volunteer opportunities that can be done at any time and remotely. And we also greatly appreciate the input.

Jennifer: Any last-minute thoughts?

Cris: I wanted to mention something about how people with misophonia are, in my experience, incredibly creative, intelligent, and kind individuals. Just wonderful people who have this...frustrating thing...that makes us different. We have each other in the misosphere. We are all in this together and we can help each other out.

Jennifer: What an incredible thing to say. I share your feelings and so much appreciate that statement. I thank both you and soQuiet for all that you are doing.