When my daughter was just 6 years old, she looked up at me and said, “When I hear bad noises I feel like I am turning into the Incredible Hulk. Mommy…can you fix my brain?”
Today, she is 22 years old. She is beautiful, social, creative and an academic standout. She is living with misophonia. Her condition is present in her life but has not defined nor limited it.
It’s a long journey between those two points. In fact, it’s still ongoing, and it has defined much of my life and work.
In the simplest terms, misophonia is a disorder in which certain common auditory stimuli are misinterpreted as dangerous. Individuals with misophonia are “triggered” by repetitive, patterned-based sounds such as chewing, coughing, pencil tapping, sneezing, etc. Misophonia is physiologically based and not psychologically based, and if a child or an adult with misophonia react to the sounds you are making (throat clearing, a fork dinging a plate, tapping of feet under the dinner table), they aren’t behaving badly, and they’re not angry with you. The sound is making them angry. Also, misophones (people with misophonia) might not be unable to calm down as quickly as others because the branch of the nervous system meant to subdue the fight-or-flight response might take longer to kick in.
I first became aware of misophonia through my daughter’s experiences and because I have symptoms as well. Misophonia is a relatively new term; however, it has been studied for decades, and when my daughter was diagnosed back in the 1990s, we knew the condition as a subtype of sensory processing disorder. Soon, I found more and more people who had this condition, or had family members who were misophones. Even as awareness spread — you know, that “Wow, you have that too?” phenomenon — reliable information was scant and contradictory.
As a psychologist, I decided to devote a significant portion of my life to studying the condition, not to mention advocating for research and education.
I soon determined that to develop effective methods for helping people with misophonia (much less understand the underlying causes of the condition), mental health researchers and clinicians had to pull from educational psychology, neuroscience, counseling psychology, cognitive psychology, developmental psychology, and clinical psychology, and gain a working knowledge of sensory processing. My first step had to be to encourage active communication amongst all of these people, each of whom were privy to some vital parts of the puzzle, but none of whom were talking to each other.
With all this in mind, in 2007 I began the Sensation and Emotion Network, and in 2008 I founded the Sensory Processing and Emotion Regulation Program at Duke University. More recently, I began the International Misophonia Research Network and become a proud advocate with the A2A (Adversity to Advocacy) Alliance, an amazing network of different kinds of disability, health, mental health and other advocates.
In slightly different yet complimentary ways, each of these groups seeks to get people talking to each other: people with misophonia, parents, doctors, academicians, psychologists, occupational therapists, even people crawling over the unmapped roads of the internet searching for some reason why they just started screaming at Great Aunt Clara at Thanksgiving dinner.
I must stress that none of the groups I helped start claim, even remotely, to have found a “cure” for misophonia. But by getting all of these people together to discuss this extraordinary puzzle and share what they know — and by sharing knowledge about the many elements that make up misophonia — we can intelligently develop compassionate ways to help people live with this common condition.
All the time, I think of that moment when my daughter asked me to fix her brain.
I also hear these words echoed in the emails and calls I get from the children and adults who live with misophonia.
No, we can’t make the bad noises stop.
But we can help her and everyone else with this condition (and their families) understand what is going on in their brain and bodies, we can suggest much-tested ways for those with misophonia (and those around them) to live with the condition; and we can get all the people who hold some piece of the sensory disorders puzzle together and find out more and more about what’s going on inside the brain and body of someone with misophonia.
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