Shaylynn Hayes-Raymond is co-founder and Editor-in-Chief of Misophonia International, and is a passionate advocate for misophonia, mental illness education, and OCD. Shaylynn is the author of several fiction and non-fiction books including Full of Sound and Fury: Living With Misophonia, Acceleration, How We Survive Ourselves, and the poetry anthology The World Breaks Everyone.

Q: How has Nova Scotia played a role in your love for art?
A: I think where we grow up always has some influence on what art you make as you go along. None of us live in a bubble so we’re all influenced by things one way or another. I currently live in another province, but home still calls my heart.
Q: Do you feel there are therapeutic benefits in the arts, whether it’s painting, writing, creative design, for those who suffer from any sort of condition?
A: There’s an entire field of psychotherapy and psychology dedicated to art therapy—those professionals know far more than I, and they tout its benefits as being highly enriching. In my own life I’ve found writing and painting to be great when I’m at my worst, but I know I would do them even if I felt fine. As for design, I do find it relaxing and fun at times but it is most fulfilling for me when I am applying it to an advocacy project. I have an honours diploma in Creative Digital Media I worked as a web, graphic, print designer and marketer for 10 years and I never felt like it was the right fit. I then got a Political Science Bachelors and I was hooked to advocacy because of the pain and suffering myself and others were going through with misophonia.
Q: When did you start writing more seriously?
A: I’ve been writing for most of my life. I wrote my first poem when I was 10 years old about 9/11. I guess there are just some people that are destined to write, and I’m one of them. I never really started to take it seriously, it was just always there.
Q: Out of all the styles of writing (fiction, non-fiction, poetry) that you’ve done, which is your favorite?
A: Definitely not non-fiction, that’s for sure. While non-fiction serves a practical purpose, my heart is always in fiction. I love exploring characters and worlds. Non-fiction is harder to enjoy but it is a labour of love in the sense that it gets the message of misophonia out there.
Q: You’ve written practical workbooks on the topic, including “Misophonia Matters Adult and Teen Self-Help and Clinical Workbook” and “Misophonia Matters: An Advocacy-Based Approach to Coping with Misophonia for Adults, Teens, and Clinicians”. Tell us more about these books and what readers can expect to learn.
A: These two books go hand and hand. The worksheets included in the workbook all come from the main book. The goal of these books was to give adults, teenagers, and clinicians working with persons with misophonia perspective on how to help individuals (and families) cope. Much of this comes from what I have learned over the years from Dr. Jennifer Jo Brout, as well as Susan Nesbit, and the works of Dr. Stuart Shanker, Dr. Lucy Miller, and Dr. Winnie Dunn. There is a wide breadth of information on sensory integration and self-regulation if one is willing to look for it! The goal of Misophonia Matters is to bring self-advocacy (accommodation, adapting to the world), psychoeducation (learning about the condition), sensory regulation (physiological coping skills) and cognitive/psychological tools (our perspective on misophonia) together in an eclectic approach. There is no one size fits all, and at the end of the day coping is tailored to the individual.
Q: Another of your books, “Full of Sound and Fury: Suffering with Misophonia”, sounds much more personal.
A: The title you shared was the original 2015 title. I’ve since changed it to Full of Sound and Fury: Living with Misophonia because the original title had far less hope. While I still believe we are suffering, I do think it is possible to also be living and even thriving with misophonia. Perhaps this is just splitting-hairs, but over the years I’ve come to feel like hope is a very important part of living with the disorder.

Q: When and how did you become involved with The International Misophonia Foundation and the website Misophonia International?
A: Misophonia International was a joint project between Dr. Jennifer Jo Brout and myself, which we founded in 2015. At the time, Dr. Brout was bringing researchers together for The International Misophonia Research Network (IMRN) which is now part of So Quiet. Dr. Brout and I met while I was writing Full of Sound and Fury and upon learning I was a website designer, we got together and started working on projects. Misophonia International was incredibly ambitious in the beginning and Dr. Brout and I put out 6 issues of a physical print magazine. That project was a little too ambitious and we moved more to blog posts and generalized advocacy as well as fundraising for researchers such as the LeDoux Lab. Come 2018, Dr. Brout and I started Misophonia Education which held classes on misophonia with Dr. Brout. We did this until 2021. Due to personal reasons during the pandemic, running these classes became burdensome and we decided to shut down Misophonia Education and go our separate ways, remaining personal friends in the meantime. It was particularly challenging to keep up as I was obtaining my Masters’ in Counseling Psychology at the time—and as you can imagine, this was exhausting!

Q: Tell us a bit on how the Foundation and website have grown over the years? Are both people who suffer from Misophonia and their family or friends finding their way to the site?
A: Compared to the years of advocacy I’ve spent on misophonia, The International Misophonia Foundation is practically an infant—started August 2023. I’ve thoroughly enjoyed having a board of people who are here with me for the journey and we had a wonderful online conference during Misophonia Matters May (the yearly advocacy event I have been holding with Misophonia International). Misophonia International is still going strong as the article site which provides perspectives, research news, and reviews on helpful tools. The foundation has been focusing on research studies and we are happy to announce that we have had several participants. Our goal is to continue working on research (we started our own journal as well), and advocacy projects. Most recently, we have launched a campaign to get misophonia into the DSM-6 and ICD-12 – that’s going to be a long road!
It’s been almost ten years since you started advocacy related to Misophonia. Do you feel there’s been tangible advancements in our understanding and treatment of the condition?
Yes and no. More people are receptive to the disorder and have heard about it. Research like Dr. Kumar’s has legitimized the disorder as a brain disorder, and yet, many are still clueless about what words like interoception mean, and there is a wide misunderstanding of sensory disorders still. Not having misophonia in any diagnostic manual is not helping things.
Q: What do you think is the number one misunderstanding of Misophonia by those who don’t have it?
A: The main understanding I’ve seen is that even when a person believes in misophonia that does not have it, they do not understand the gravity of the condition. I have heard many people without misophonia explain it as, “she gets annoyed by sounds”, even those in my personal life who should know better. I think that the reaction is so extreme it can be hard to comprehend.
Q: What would you like to say to teens who sometimes may feel that their situation is hopeless?
A: Nothing is ever hopeless. Even on really bad days try to find those 10 seconds of peace and joy and sit with that. There are many good things in life that make it worth the while, even if misophonia seems to blacken prospects. I would suggest finding ways to love the world around you despite misophonia. Easier said than done, but important nonetheless.
Resources and Links:
The International Misophonia Foundation: https://misophoniafoundation.com/
Misophonia International: https://www.misophoniainternational.com/
Misophonia Matters Book: https://books2read.com/MisophoniaMatters
Misophonia Matters Workbook: https://www.amazon.com/Misophonia-Matters-Self-Help-Clinical-Workbook/dp/1990467164/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=
Misophonia Matters Class: https://misophoniafoundation.com/shop/misophonia-matters-class-on-demand/
Petition: https://misophoniafoundation.com/petition-to-recognize-misophonia-in-the-dsm-6-and-icd-12/
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