As a person with misophonia, I have had strong reactions to some of the attempts to pathologize and treat misophonia. Oftentimes, these theories and treatment concepts are merely thrown out into the wild by practitioners who are using their own ethos and perspective, rather than asking people with misophonia what they think should be done for misophonia. Of course, there is always a degree where scientific rigor and expertise cannot be garnered from lay-people, but ignoring the community entirely is in my opinion both unethical and dangerous.
One such questionable study I can think about was a preprint from academics at Baylor University who said that people with misophonia should not be accommodated—even more chilling was that the people involved in this study were children. After a petition which I helmed circulated the internet and was delivered to Baylor, they seemingly relented on this issue. And yet, I am left wondering why we had to have this petition in the first place. I said the following to a misophonia researcher regarding academics who ignore sufferers and go on to formulate studies, shoehorn their ideas, and then blindly publish results:
“The issue here is that researchers are standing in their ivory towers making observations without actually diving deeper into the lives of people actually struggling from this disorder.”
I stand by these words today as strongly as the day I feverously typed them into a strongly worded email. As a person with misophonia, if a study truly showed some groundbreaking treatment, I would be jumping for joy. I would then probably cry a bunch because the level of relief that I would feel would be insurmountable. I have yet to have a moment like this when it comes to the sparce—yet growing—body of misophonia literature.
Numerous questions on misophonia have yet to be answered, let alone how to “treat” this disorder. The first question I will propose is what are we even looking for in a treatment? I will say that any amount of change that leads to sufferers of misophonia being better equipped to live their lives with this condition is something that should be celebrated. Yet, these small changes should not be championed as a be all and end all, especially when many people do not have access to practitioners and cannot afford the “treatments” being touted in the first place.
As a counsellor, I know that there can be meaningful changes from psychoeducation, sensory-regulation, or cognitive skills for misophonia. Yet, these changes are not a cure, but rather they are a means of living with the condition. This is something powerful and important, but it should not be overstated, lest sufferers of misophonia expect a level of change that is unrealistic and impossible based on a neurophysiological condition that may or may not see a physiological treatment any time soon.
It is my hope that this book tempers expectations whilst offering an advocacy-based approach to empowering people with misophonia and their loved ones. This is not to say that no change is possible, but merely to understand the word “treatment” from a realistic perspective. Instead, we are measuring change in ability to cope on a day-to-day basis, and not as a remediation of all symptoms entirely.
If you are looking for misophonia coping skills, you can go here to see coaching (worldwide) and here to see therapy (Canada) options with Shaylynn Hayes-Raymond. Shaylynn also offers both live and on-demand webinars for misophonia.
