When Jason Ritter announced that his fiancee, actress Melanie Lynskey has misophonia, some people may have been met with interest, and others confusion. I suffer from this disorder too. It’s courageous for Jason and Melanie to openly discuss this disorder, especially since the disorder is lesser-known and has been met with criticism and speculation from the press, and even some doctors are unsure just what it means. For sufferers of this condition that can be polarizing. Misophonia is more than just “hatred of sounds,” it is a neurological disorder.
Sufferers with Misophonia experience what Dr. Jennifer Jo Brout (Founder of the International Misophonia Research Network and the Misophonia and Emotion Program at Duke University) explains what Misophonia is, via the research:
“[M]ost of the studies demonstrate that the part of nervous system that activates fight/flight (the sympathetic system) is over-aroused in response to the aversive sounds commonly described by misophonia sufferers. In addition, these studies suggest that there is a problem with regard to the connectivity between the auditory pathways in the brain and the pathways in which emotions are processed. Brain imaging studies also reveal hyper-activation in these areas (that is, when misophonia patients listen to noises they find aversive, these particular brain areas light up).”
Unfortunately, in the digital age, new disorders have a lot of trouble coming up. Instead of academic articles that are vetted, and reporters that find sources in the medical community, anybody can claim they have a “treatment” and in the world where Wikipedia and WebMD become the new doctors, there is little chance for verification before misinformation spreads like wildfire. In-fact, Dr. Jastreboff who coined the disorder in 2001, worries about these false cures and explains in my prior Huffpost article, “I Have Misophonia and We’re Being Exploited,” his feelings on these ‘treatments’ are rather strong:
“I am familiar with this application, and I am concerned that it actually may make misophonia worse.” In regard to other treatments proposed, he believes neurofeedback is “neutral ― it will not help, but it will not harm” and that hypnotherapy is, “rather neutral, but with potential negative side effects.”
Dr. Brout has also spoken out against what she calls a bevy of charlatans in her New York Observer piece and expresses her concern when she says, “When you Google misophonia, you get them. When you read mainstream articles about misophonia, you see their treatments and groups referenced in the articles. Instead of informed doctors or researchers, you find people promising “cures” to desperate sufferers. I know people who have been have bilked out of over $10,000 (and more), never mind the emotional cost incurred.”
While therapists may think to go for CBT or other cognitive therapies, they are likely to make Misophonia worse due to it not being a cognitive disorder and being neurological and brain-based. One proposed treatment comes from Dr. LeDoux’s work on the amygdala at NYU, and memory reconsolidation therapy has been proposed as a possible treatment in an upcoming study from Duke University. You can learn about Memory Reconsolidation in the following video.
I encourage Melanie and Jason to become involved in the advocacy community. Misophonia is a polarizing condition, and for many sufferers there are little avenues and resources. While Misophonia International and the International Misophonia Research Network facilitate research, and help sufferers with coping skills, there is a greater need for action on a global front. Research, as you can imagine, requires funding – and the NIM has been in crisis these past few years. When diseases like cancer are struggling to find backing, you can imagine the hardship that faces a condition that many doctors are unaware exists.
As an advocate, and sufferer of the disorder, I am greatly impressed by the courage and gumption that Jason and Melanie have shown by putting themselves out there and talking about Misophonia, Kelly Ripa was practically mocked in tabloids when she discussed this condition – and unfortunately, Misophonia sufferers were ridiculed by Kathy Lee and Hoda and called “phony” on air as they mocked potential triggers. Sufferers of the disorder were left hurt, crying… and completely disheartened by the bullying that Misophonia sufferers have faced.
Misophonia sufferers need research and advocacy. One cannot exist without the other. Research is important because it provides the important underlaying mechanisms, and a potential treatment. Advocacy is important because an understanding of this disorder can help reporters, sufferers, and family members to sift through the “mess” that has become an upcoming disorder. Not only is awareness for Misophonia important, this awareness must be based on scientific scrutiny, and on a factual representation of the disorder.
I hope that in wake of more celebrities ‘coming out’ with Misophonia that we see a paradigm shift. While it may not seem like much, every retweet, share, and information exchange helps for more sufferers to learn about potential resources, and the more persons that donate to research, the greater chance we have to see a cure in the next few years. While Misophonia is a polarizing endeavor, I believe we are truly seeing the sun rise and shed light on this dark disorder.
Misophonia Resources and Links:
How to cope with Misophonia: http://www.misophoniainternational.com/misophonia-coping-tips/
Information on treatment: http://www.misophoniainternational.com/misophonia-treatment/
How to explain Misophonia: https://www.misophoniainternational.com/how-to-explain-misophonia/
Sensory Diet (Coping skills by OTs): https://www.misophoniainternational.com/product/sensory-diet-adults-susan-nesbit-o-t-digital-download/
What is Misophonia? https://www.misophoniainternational.com/what-is-misophonia
Current Misophonia studies: http://misophonia-research.com/current-research/
Research advisory board: http://misophonia-research.com/misophonia-advisory-board/
Misophonia Providers: www.misophoniaproviders.com
Donate to Misophonia research: https://www.gifts.duke.edu/dukehealth/?designation=3910412