Cris Edwards is the Founder and President of SoQuiet.org, a nonprofit Misophonia advocacy organization.
Q. What inspired you to start SoQuiet, and how has your personal journey with misophonia shaped the organization’s mission?
A: Good question. I have struggled with misophonia for decades. I am now 50. Before soQuiet, I knew that a lot more could be done to genuinely help people by spreading awareness, providing personal support resources, and advancing research. There was so much that clearly needed to be done and nobody, at the time, seemed to be doing those things. When the pandemic happened, I had been working on local theatre productions and those were on hold for some unknown time because of COVID. I used that downtime to start a nonprofit organization that would do many of the things that needed to be done on behalf of other people with misophonia.
Q. What do you see as the key challenges in raising awareness about misophonia among the public and medical professionals?
A: One of the key challenges is how people get factual information and the amount of misinformation out there about misophonia. A lot of incorrect information or speculation that people think is factual gets spread. This muddies the water and can even cause harm. We see some people, too, who are peddling various spurious claims of treatments which have no evidence of efficacy. I don't like to see people who are struggling with misophonia get taken advantage of. We have a strategic plan, with help from our partner organizations, clinical and scientific advisors, and volunteers, to improve the situation as a group effort. We are seeing notable improvements, actually.
Q. How does SoQuiet advocate for students with misophonia, particularly in educational environments where awareness might be low?
A: Great question. We frequently help students ask for and obtain accommodations for misophonia at school. However, the process is not always smooth; schools or administrators sometimes push back on the requests, don't understand misophonia, and are reluctant to help. Not always; many schools have done amazing work for their misophonic students. But we do work on difficult situations and speak to the school staff directly to provide factual information on the validity of misophonia and its major impact on schooling. We made a guide about this on our site at: soQuiet.org/school
Q. What exciting developments or ongoing collaborations do you have with research institutions like Duke’s Misophonia Center?
A: There has been some very interesting and helpful early information appearing from research. We have some brain scan [fMRI] based studies that have given us some compelling info. There is great interest in potential effective, evidence-based treatments, whether they are psychological therapies, pharmacological treatments, or even neurostimulation practices. Misophonia is fascinating to researchers because it's odd and they want to figure it out. We know of some upcoming studies that are very intriguing and that gives us hope.
Q. What role do you see emerging technologies, like adaptive headphones or sound therapy, playing in improving the quality of life for people with misophonia?
A: There is some work being done at University of Washington on a very interesting AI-based, context-aware noise cancelling technology that could produce a very promising assistive device or app for people with misophonia. There are other things being worked on but that one sticks with me as something that could be so helpful and is already under way.
Q. Misophonia often coexists with other conditions like ADHD or autism. How can medical professionals better address this intersection?
A: I am not a medical professional. I went to grad school for theatre. So, I may not be the best person to answer this. In my layperson's view, I think that once we have published diagnostic criteria in industry-standard medical texts, then clinicians will not only be much more aware of misophonia as a valid and unique disorder, but also how it differs from other known conditions it often occurs in tandem with, such as ADHD, OCD, etc.
Q. In your experience, how do people with misophonia navigate the mental health challenges associated with the condition, such as anxiety or isolation?
A: It can be tough. But things are getting better. It's understandable that isolating can be a coping strategy. I've certainly done that,too. But it can also feel depressing and hopeless. We want people to know that it's possible to have a rewarding life with misophonia. We know because we have seen so many people do it. It takes some trial-and-error to find out what "tools" work best for you, but those things together can make a really tough situation seem more hopeful. While we don't yet have a proven, evidence-based treatment for misophonia, I think those are on the horizon in the next few years. And we DO have proven treatments for the secondary things that misophonia can bring, such as anxiety, depression, isolation, emotion regulation, etc.
Q. You have a background in theater—how has creativity influenced your approach to managing and advocating for misophonia?
A: It could be a kind of selection bias on my part, but people with misophonia seem to be very often involved in and attracted to creative fields. Anytime I meet someone with misophonia, the odds are very good that they are a writer, musician, designer, etc. So this potential connection has fascinated me for years. We even put up a page about it on the soQuiet site and held a misophonia arts event last year. For me, the creative process is therapeutic. As well, much art is created on our own, even in the theatre, where we have some privacy and ability to avoid aversive sounds. My work in theatre has also allowed me to have some say in creating a more misophonia-friendly workplace. For example, when I am directing a play, I can make a rule that gum and food are not allowed in rehearsals. Things like that can be helpful.
Q. What advice do you offer to families with a member struggling with misophonia, especially in managing daily triggers at home?
A: It requires some understanding and willingness to adapt a little for all people involved. We sometimes think that solutions are "all or nothing" and this can be frustrating to the person with misophonia as well as their family members. Open communication, empathy, and a little creativity help. Overall, we try to help families see "meet in the middle" solutions that everyone can find acceptable.
Q. How do you see the neurodivergence movement evolving, and what role does misophonia play within that broader conversation?
A: I think it's up to each individual with misophonia to determine if they consider themselves 'neurodivergent'. Some do, some don't. But the great progress the movement has made, thanks to other groups such as the ADHD community and the autism community, have paved a path for those who do identify as neurodivergent. On a larger scale, this movement has greatly helped the general population understand that people can have very different ways that they naturally think and get by in the world. It raises awareness about the "social model" of disability in a way that can help.
Q. SoQuiet hosts peer support groups and creates resources for people living with misophonia. How have these initiatives impacted your community?
A: It's been very helpful for many people. We hear, frequently, how informative, validating, and emotional the peer support program has been. We created the first comprehensive peer support program for misophonia in the world. We wanted to make sure we had a strong foundation of the core concepts of peer support before we started hosting peer meetings and groups. We spent a year creating this program, and included my training to be a Certified Peer Specialist [CPS] with my state. We have a free three-hour training we created for the Guides, or facilitators, of the groups which really helps lay the groundwork for what peer support is. It's a strong program that has received very positive feedback.
Q. What steps can employers take to accommodate employees with misophonia, particularly in open-office or noisy work environments?
A: We've helped dozens of people get workplace accommodations for misophonia. We have a page about how to do this on our website: soQuiet.org/work . But, in general, the Americans with Disabilities Act of 1990 [ADA] federally mandates that employers with more than a few employees must provide reasonable accommodations to employees with disabilities, whether they are visible or not. There are many common accommodations that get requested such as a quiet workplace, ability to wear headphones in the office, a "no gum or food" policy in work areas, ability to leave triggering situations, work from home set ups, visual barriers like folding screens, and much more.
Q. What is one piece of advice that you can offer to someone who has just recently been diagnosed with misophonia?
A: Don't lose hope. I know it can feel tough to get through today — and certainly some days are better than others. However, things are improving. We have a word for this thing, misophonia, which is itself very helpful in that it's an established "thing" to hang our struggles on. We have very active and productive research ongoing. We have a great community, the misosphere, with millions of people in it who share our experiences. Clinicians are increasingly becoming familiar with this frustrating disorder. There is a lot more work to do, absolutely, but we've made a lot of progress. Don't lose hope.
Q. What are your long-term goals for SoQuiet, and how do you plan to expand its impact in the next few years?
A: We have a strong plan going into the next few years. We have fantastic support and amazing partners. We have a clear approach to raising awareness going forward, since that is the biggest hurdle we see. We are 100 percent at the service of the misophonia community which includes all people whose lives are affected by misophonia. We have so many really cool projects in the works, which are based entirely on the input we get from the community. We can't wait to share them with you soon.
Q. What do you think are the most persistent misconceptions about misophonia, and how can they be addressed?
A: That life with misophonia is always going to be bad; this is defeatist and unproductive. We've seen people with exceptionally impactful misophonia find hope and happiness in life. Things change and can certainly improve. As I mentioned earlier, I worry a lot about the misinformation and disinformation out there regarding misophonia. Try to tune out the naysayers and the people making big claims without big evidence. I think we should all work to protect our own serenity each day in a way that suits each of us. It's ok to ask for help. Let's support each other in whatever unique troubles we have. Together we are strong.
Q. How did the idea and implementation of "World Misophonia Awareness Day" (July 9) come about?
A: There have been a few attempts over the years to make a misophonia awareness day or week of some kind but none of them caught on much, for various reasons. But the topic has been on the minds of so many of the people who are active in the misophonia community for a few years. It was one of those ideas that we knew would need to be addressed sooner than later, especially with the knowledge we now have about misophonia's prevalence compared to the general awareness of it out in the world and especially in clinical fields. We needed a strong and official misophonia awareness day, but when? And why?
The week before I was going to be speaking at the annual meeting of the Misophonia Research Fund [MRF] in Chicago about the major impact that misophonia can have on a person's life, we learned of the story of Michelle Del Valle, a 17-year-old in Florida who, tragically, took her own life because of how hopeless she felt about a future with misophonia causing her suffering every day. And the lack of understanding about it from the clinicians her family took her to see just added to the problem for Michelle, according to her father and sister.
I made sure that I talked about Michelle Del Valle's experiences and story, with her father's blessing, at the MRF meeting and asked the attendees for help on how to share Michelle's story and how it is a terrible and sobering reminder of how misophonia affects everything and is way more than just an aversion to certain sounds.
A lot of good ideas were discussed, but the one that seemed to stick out was to use Michelle's birthday, July 9th, as the anchor for an official misophonia awareness day. It would ensure that Michelle's story would be the catalyst for education about misophonia going forward. Michelle's family was completely supportive of this idea and many other misophonia-focused organizations were on board to make it happen from the very beginning.
The rest just fell into place and it was a truly incredible honor to be able to make it happen so that Michelle's struggles are never forgotten.
Resources and Links:
SoQuiet website: https://www.soquiet.org/
Instagram: https://www.instagram.com/soquietorg/
YouTube: https://www.youtube.com/@soquietorg
Facebook: https://www.facebook.com/soquietorg
Threads: https://www.threads.net/@soquietorg
New York Times mention: https://www.nytimes.com/2024/06/13/style/headphones-phone-etiquette.html
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