If you Google “misophonia” you might be shocked to find numerous articles discussing the tragic suicide of 52-year-old Russian-born scholar, Dr. Michelle Lamarche Marrese. Journalist Joyce Cohen was the first to report Marrese’s suicide in the New York Post piece “She could hear everything and it cost her her life.” Cohen explains that she and Marrese had been corresponding about Marrese’s struggles with misophonia for over 14 months, and that in her last correspondence to Cohen, Marrese stated,  “Forgive the intrusion and the outpouring. I have left your name for my husband. If I can’t stand any more agony, at least you can write about me.”

Misophonia (termed by Drs. Pawel and Margaret Jastreboff of Emory University in 2001) is characterized by heightened physical tension and negative emotional reactivity in response to decreased tolerance for specific sounds. Sounds can be soft or loud, and are often pattern-based. Typical sounds that trigger aversive responding include chewing, pencil tapping, breathing, keyboard clicking, throat-clearing and more. Offending sounds often emanate from other people but may also come from animals and inorganic objects as well (e.g., rain tapping on the roof, clicking of turn-signal in car). Common physical reactions include increased heart-rate, sweating, and muscle tension. Emotional responsivity includes feeling overwhelmed, fear, panic, anger, rage, and the need to get away from the offending sound.

Misophonia is not a condition to belittle or to ignore. However, Maresse’s tragic suicide likely had to do with other factors in addition to the sounds that plagued her. Before her death, Maresse’s Facebook page was replete with despairing remarks about her husband, who after 30 years of marriage, had reportedly asked for a divorce. Some of Maresse’s comments included:

“So I am being dumped after 30 years of taking care of him and being left alone”

“Our marriage vows are a joke … 30 years of lies, I cannot live this way.” Too much grief. I am suffering beyond words.”
Friends and family assumed that Maresse’s suicide was related to her disintegrating marriage. However, journalist Cohen is certain Maresse committed suicide solely because of misophonia. According to Cohen, during the time of their intimate correspondence, Marrese wrote about the shrill noise that could be continually heard from the neighbor’s construction. Maresse also told Cohen that her husband’s breathing and chewing was unbearable, and that she felt rebuffed by him. He did not understand her emotional struggle and they often fought. In addition, Maresse confided in Cohen that she was struggling to finish a book she had been working on for 13 years, felt trapped in her marriage due to finances, and suffered from migraine headaches.

As this story clearly illustrates, misophonia has received more attention in the press than it has in academic or medical studies (a problem perhaps not unique to it). Because of this, many people with the disorder are not properly diagnosed. We do not yet have a validated way to test for misophonia. Therefore, many people with misophonia may also have co-occurring depression, anxiety, or even underlying medical or developmental conditions that have not been identified.

Certainly, Ms. Cohen felt compelled to fulfill her confidante’s last wish. However, the NY Post article and ones that have stemmed from it are causing unnecessary fear amongst people who have misophonia. Most notable, are the calls I and other misophonia providers and advocates have been receiving from concerned parents worried about the uncertain futures of their young children with misophonia.  We hope this piece serves to clarify what is known, and what is not known about the disorder.

While the body of misophonia research is small there is agreement that:

• Misophonia is real.
• Misophonia varies in severity from mild to severe.
• Many people cope and/or develop coping skills.
• Others have greater difficulty and may have impaired social, academic or work-related functioning.
• Underlying mechanisms are auditory and neurologically based with behavioral, cognitive, and emotional responses.
• No single cause has been determined.
• Misophonia is most likely related to atypical connectivity between auditory brain areas and the parts of the brain that process emotion.
• One of the candidate brain areas that is highly likely to be involved is the amygdala, as it mediates autonomic (involuntary) nervous system arousal and fight/flight response.
• There is not enough evidence to make conclusions about age of onset.
• Academic or scientifically based genetic studies have not yet been done.
• Specific co-occurrences with other disorders is unknown, although anxiety and obsessive personality disorder, and sensory processing disorder are suggested.
• The best treatment at this stage includes a cross-disciplinary approach that is specific to each individual’s needs.

Dr. Zach Rosenthal of Duke University states, “Trigger sounds set off a ‘domino effect,‘ that begins with a physiological response that affects cognition, emotion, and behavior.”  He adds that “Misophonia should not be classified as any specific type of disorder (i.e. psychiatric or auditory) but should be researched and conceptualized across multi-disciplinary fields such as audiology, psychology, neurology, neuroscience, medicine, nursing, occupational therapy, etc.”

In conclusion, those with misophonia (and their families and friends) should by no means assume that having misophonia is a suicide risk factor. In fact, suicide experts recently reported that predicting suicide, in general, is, unfortunately, more unreliable than had been previously thought.   A recent review of 50 years of suicide research published by the American Psychological Association (November 16) reports that:

Despite major advances … our analyses showed that science could only predict future suicidal thoughts and behaviors about as well as random guessing. In other words, a suicide expert who conducted an in-depth assessment of risk factors would predict a patient’s future suicidal thoughts and behaviors with the same degree of accuracy as someone with no knowledge of the patient who predicted based on a coin flip …

Suicide should be never be taken lightly. However, it is a huge inferential leap to assume that Maresse’s tragic death was solely due to misophonia as Cohen reported. We need more research on the association of misophonia with mental illness, and how the combination of misophonia symptoms may or may not predispose individuals to self-harm or suicidal ideation. Cohen was left with an ominous mission and did what she felt was right. However, as much as we would all like more information as fast as possible, it is most important that we report and circulate accurate knowledge.

Jennifer Jo Brout is a psychologist. Barron H. Lerner is the author of The Good Doctor: A Father, A Son and the Evolution of Medical Ethics.

Image credit: Shutterstock.com