Misophonia is a newly termed (Jastreboff and Jastreboff 2001) disorder in which sounds cause a fight/flight/freeze reaction for sufferers. The popular press has rushed to characterize this disorder, finding an interesting human experience in patients who react to common noises such as chewing, tapping, whistling, and humming. However, like most disorders that have been showcased for the “shock factor,” this has led to several misconceptions about misophonia.
One common misconception for misophonia comes from its name, which should not be taken too literally. Yes, misophonia sufferers are impacted by sounds, but it is not a hatred of sound. In-fact, there are several accounts of misophonia sufferers using music to cope with the disorder. Headphones with music or white/brown/pink noises are the most common way persons with misophonia get through the day.
Misophonia sufferers first experience the fight/flight/freeze response. Before anger sets in, panic ensues. Palms sweat. Heartrates raise above normal. The emotional response comes later, when the “hatred” sets in, which for some, feels more like pain. I experience misophonia as a physical sensation. My body tenses, and my back even hurts. I feel as though I am being squeezed by a polar bear.
During the past 5 years, research on misophonia has grown steadily. The following passage comes from “Investigating Misophonia: A Review of the Empirical Literature, Clinical Implications, and a Research Agenda” (Brout 2018):
Several conclusions can be drawn when considering, collectively, the small number of reviewed studies using autonomic, neurophysiological, and neurobiological measures. First, the subjective responses from misophonics are corroborated by physiological measurements of increased autonomic arousal in response to misophonic triggers. This research validates the experience of sufferers of misophonia by demonstrating that, indeed, misophonic cues do elicit automatic sympathetic arousal and negative affective states. Similarly, misophonics show atypical neuronal and physical responses in the brain and nervous system in response to their triggers.
This above paragraph leads me to the misconception that misophonia is purely psychological. Currently available evidence suggests it is far more likely that misophonia is neurophysiological in nature. Unfortunately, the tendency for the media to characterize disorders it does not understand has led to some patients being “treated” by exposure therapy. This has caused frustration, pain, and some mistrust for psychology from patients with the condition. Exposing persons with misophonia to more triggers—instead of helping them cope with the sounds—causes greater pain.
As I have explained in an article on HuffPost, “Dr. Pawel Jastreboff, who coined the disorder in 2001, has worries about doctors jumping the gun and moving on to treatments so fast. He asserts that when it comes to the toted treatment methods, “we do not have any clear clinical data. Since there is not enough clinical data, this furthers worry when it comes to misophonia providers.”
Treatments for misophonia, quite simply, do not exist. Doctors can help patients by using a cross-disciplinary approach with occupational therapists, audiologists, counsellors, psychiatrists, and psychologists to help their patients adjust and cope. Coping skills are the best hope for misophonia sufferers as research continues to explore the misophonic response. Clinicians can find a list of misophonia providers at www.misophoniaproviders.com. This list can be helpful for clinicians looking to build a cross-disciplinary team for a patient with misophonia.
Most patients with misophonia are looking for support from the healthcare professionals who care for them. It can be helpful to say “I understand and believe you; I will try my best to help.”
In 2016, for Huffpost, I wrote:
I want my doctor to know that if he acknowledges my suffering and asks me how I think we should go about things that he is doing what he can. I want him to know that I do not expect miracles, I merely expect his patience. I want my doctor to know that if he does not know about my disorder, that is okay. I want him to know that I will be happy to work with him on this discovery.
Providers interested in more information on msophonia can attend webinars held by Dr. Jennifer Jo Brout (head of the IMRN, and founder of the Duke Misophonia and Emotion Program). Clinicians who attend these webinars are eligible to be listed on the Misophonia Provider Network. These webinars can be found at www.misophoniawebinar.com