People With Misophonia Add Value to Research

As many of you already know, misophonia research has taken off over the past five years. Often, I look at the research and am thrilled to see new discoveries. Other times, I look at the research and see only flaws. This is typical when we are dealing with a newly termed disorder. However, as those with misophonia hang on every thread waiting for some relief, many feel that they want to be more involved. The focus of this post is an interview with Mary Petrie. Mary is the mother of an adult child with misophonia. Years ago, she set out to become more involved with the research and to have her voice heard. I hope this interview below will inspire others who wish to be heard to find their own path.

Jennifer: Hello, Mary! Thank you for doing this interview.

Mary: You are very welcome!

Jennifer: You are in a very unique position to talk about misophonia, and I would just like to outline that for a moment. You are a parent of an adult child with misophonia, you are a doctorate-level professor and an author, and you are also volunteering to help others with misophonia. Would you tell me a little bit about your personal journey with misophonia as a parent?

Mary: Of course! My husband and I have three adult children, ages 27, 25, and 20. Our youngest, Thomas, was diagnosed with misophonia when he was 16. As a teen living at home, Thomas was particularly triggered by sights and sounds emanating from family members, although he is also triggered by an expanse of sights and sounds coming from other people and objects in the environment. It’s been quite a journey to get where we are now, and it required re-imagining what we view as normal for our family.

Jennifer: How is Thomas doing today?

Mary: Today, Thomas is a newly trained firefighter, just beginning a career that has been a lifelong dream.

Jennifer: That’s fantastic. Congratulations! Would you tell me about the current work you are doing?

Mary: Much of my work happens through soQuiet, a nonprofit providing advocacy, resources, and support for people with misophonia. The organization has started offering peer support groups for people with misophonia and another peer support space for parents of children (and adults) with the condition.

Jennifer: This is wonderful. Would you tell me more?

Mary: I co-lead one of the peer support groups for parents, which meets weekly.

Jennifer: Would you tell me about how those groups are set up and also what it is like for you, a parent of an adult child with misophonia, to lead such a group? I would imagine it’s not always easy for you.

Mary: The groups are loosely modeled after 12-step support groups. In particular, the soQuiet peer support groups embrace the nonhierarchical structure of support, where we help others who share our challenges. The meetings can be pretty painful, yes, but that actually isn’t bad. Misophonia poses such unique—and even surreal—challenges to relationships, and it is very difficult for people unfamiliar with the condition to truly understand its devastation. Talking with other misophonia parents is a breath of fresh air that brings empathetic listening and nonjudgmental support.

Jennifer: That makes a lot sense, Mary. Please tell me what else you are doing.

Mary: I’m also writing a personal, cultural, and scientific history of misophonia, a process that has introduced me to many of the researchers and clinicians who are studying the condition and has also led to a couple of writing collaborations that are still in the works and many rich conversations.

Jennifer: Wow! Mary, you are doing a lot for the community. Would you tell me what areas you find most important? Would you break that down for me?

Mary: I believe the most important areas of advocacy are community building and monitoring the scientific research for accuracy and representation. Although many people reading this might know a lot about misophonia from lived experience—either as a misophone or family member—science still knows very little about the condition.

Jennifer: Yes, that also makes a lot of sense. Would you tell me more about your view of the science?

Mary: For example, insufficient scientific evidence exists to classify the condition at all; no research yet demonstrates that misophonia is audiological, psychiatric, psychological, or neurological, etc. This means the condition is more or less up for grabs.

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Jennifer: Yes, this is definitely a problem that I encounter as well.

Mary: Professionals working within those disparate fields typically seek to understand misophonia only through the concepts and theories of their own area of study.

Jennifer: Would you give me some concrete examples?

Mary: For example, research coming from psychology presupposes that the condition is psychological, neuroscience looks to neural networks, and audiologists explain misophonia as a condition of decreased sound tolerance.

Jennifer: I completely agree with your observations. Tell me more, please.

Mary: This tendency means there’s a myopic quality to, and inaccuracies in, much of the research currently being produced. For example, papers in psychology almost always include a list of mental health conditions that frequently co-occur with misophonia and always omit the list of audiology conditions that equally co-occur, implying that misophonia arises within the context of psychological dysfunction, instead of more accurately acknowledging that misophonia also arises within an audiological context.

Jennifer: And we do not know yet what this condition is and how it should be classified. Many of us talk about this being a disorder that crosses the boundaries of disciplines. Yet we just don’t see this reflected in academia or in the popular press, which is confusing and adds to great frustration for those who deal with this disorder on a daily basis.

Mary: Visual triggers, sometimes called misokinesia, are continually overlooked in academic research. Anecdotally, it appears that most people with misophonia have visual as well as audio triggers. Why is this fact of life for people with misophonia fully ignored in scientific research?

Jennifer: I, too, have noticed that. Many people with misophonia ask me about this omission, and I don’t know what to say. Would you tell me one way that people with misophonia (and parents) might help to make misophonia studies better?

Mary: This leads me back to community, which isn’t only important for the support it provides people with misophonia but also for the ability of people with misophonia to help shape the direction of scientific research into the condition.

Jennifer: This absolutely makes sense to me, of course! If we were speaking directly about medicine, we might say we are talking about “The voice of the patient,” which has become a very important concept in related fields.

Mary: Yes, exactly.

Jennifer: Mary, if you had one piece of advice for other parents of children (young or adult) with misophonia, what would it be?

Mary: Misophonia is not about anything you did wrong. It’s not about your parenting or your child’s dysfunctional relationships with the sights and sounds that trigger them. In other words, when the dishwasher’s thrum triggers my child, I don’t worry that the dysfunctional relationship between my child and the dishwasher is the reason the dishwasher triggers my child. Yet, a lot of research, particularly in psychology, is heading in exactly this direction with human beings. This is a particularly cruel turn of events. Just when we need psychology to study how we can best preserve family relationships that are affected by misophonia, many professionals in the field are focused on the dysfunction they believe causes misophonia. Shield yourself from this by focusing instead on well-being—your own, your child with misophonia's, and the whole family’s well-being. Build on the strengths and loving relationships that already exist within your family to create an environment that is safe, and hopefully even optimal, for everyone who lives with misophonia.

Jennifer: Mary, this is such great advice. Thank you so very much for your many efforts and for doing this interview.