It is very likely that the screeching of nails scratching a blackboard or metal scratching glass will give you goosebumps, as it happens to many of us. Sometimes it is even enough to imagine them.
They are high-frequency sounds and are so unpleasant to the human ear that they can cause negative reactions in the brain, temporarily altering the mood and control of the individual.
But imagine what would happen if you couldn’t stand a simple sound, like lip smacking, or a sigh, or someone chewing, and your first reaction was to attack the source of that sound or run away. hide you?
This is what happens to those who suffer from misophonia, a disorder that has only been investigated for a few years and that involves a sensitivity and reactivity to sound stimuli that at the most severe level can be devastating for those who suffer from it and their relatives.
BBC Mundo recorded the painful experiences of 2 women whose lives have been convulsed by this evil: the mother of a young man with the disorder and another who has suffered from it since she was a child.
We also spoke with a clinical psychologist and a neuroscientist to try to clarify the causes of this hearing condition, the research that has been carried out and what science is trying to find a therapy for.
(Names of affected individuals have been changed to protect their identity )
Inside “the tangle of misophonia”
Grace, from 52 years old, lives in Minneapolis, Minnesota, where she is a university professor. She has almost 24 years married and has 3 children; two males from 15 Y 19, and one daughter of 001.
“I would say that we had a typically happy family life, with problems that would be considered normal ”, he tells BBC Mundo.
Until he began to notice a curious behavior in his youngest son.
“When Matthew had some 12 years, began to develop a life more and more distant me… He spent more time with his dad, when he had a problem he went to him”, he says. “I put it down to his interests, to how different he was from me.”
He liked to be outdoors, ride a bicycle, go out with his friends and play sports, while she is attracted to academic life, reading.
Grace even joked with her husband and told him that the boy seemed only his son.
They stuck with that idea, “tragic in hindsight,” says Grace, because if they had known it was related to a more serious problem, they might have been able to intervene earlier.
Because when Matthew had some 15 years, the situation became more dramatic: Matthew began to run away from Grace.
“If I entered a room where he was, I would run away. Or he would duck in a corner until I came out,” she describes. “The worst was in the car, when he took him to school or to an appointment. He would slouch all over, pull up the hood of his sweatshirt, and not speak to me.”
Grace asked him what was happening, but the boy was unable to articulate it and answered “nothing”.
“That evasion gave me the feeling that he hated me, and that was devastating for me”, he expresses.
“We lived in the same house, but almost I never saw it, hardly heard it, it literally disappeared during that acute stage. He also lost a lot of weight, he was very stressed, he looked tormented, miserable.”
Something was happening and they couldn’t figure it out. Until they made an appointment with a psychologist and that was when they were given the diagnosis: misophonia.
I hate sound
Misophony is a a relatively new term that describes a hearing disorder that is not clearly understood, tells BBC Mundo Zachary Rosenthal, clinical psychologist and professor at the Department of Psychiatry and Neuroscience at Duke University, United States.
Involves a type of sensitivity and reactivity to sonic stimuli and/or visual signals repetitive.
Sounds are typically, but not always, produced by other people, whether with the face, lips, nose or throat
, says Rosenthal, and usually occur in settings where the affected person feels trapped, such as someone chewing an apple on a bus, or gobbling, or slurping.
These soundsare described like “triggers” because they cause or unleash an intense reaction in the sufferer.
The term comes from the Greek and literally means “hatred of sound”, and although it was adopted after careful consideration, the psychologist finds it unfortunate.
“People with misophonia does not necessarily have a hate, but that experience a wide range of emotionss, and rresponds with emotional, cognitive and physiological behavior that happens almost automatically and does not can controlr…
“Those who suffer from misophonia see the person who makes a noise that affects them “as a aggressive bear”, and his body reacts as if he is a significant threat, which triggers the instinct of flight or fight, and that he is unable to evader”, indicates Dr. Rosenthal
The disorder can lead to disability and in the most severe cases it is devastating, both for the individual and their family.
“My mother was the trigger“
“The first memory of my childhood is of an event that triggered a misophonic reaction. My mother was the trigger”, Diana tells BBC News Mundo.
“We were sitting watching television when he told me he wanted to tell me a secret. Being a girl, I was excited about her complicity.”
“But what she did was put a bunch of potato chips in her mouth and crunched them close to my ear”.
Diana now has 52 years old, is married with two children, and has lived with misophonia all her life.
He is not sure how old he was when her mother played what he imagines was a joke on him. She only remembers the fury it caused her and how she screamed, cried and suffered colic.
From then on, her relationship with her mother was very strange.
“She always made noises because she knew I would have a reaction. Apparently he found it funny, because he kept doing it.”
He admits that he came to hate her, literally. “It’s not like the kids who sometimes say ‘I hate my mom and dad.’ No, I absolutely hated her. She developed a total emotional detachment.”
She did what she could to avoid it. She stayed as long as possible in her bedroom, she learned to eat very fast so she could get up from the table as soon as possible and as soon as she was old enough, she went out whenever she could.
Diana was the youngest of six siblings. The grown-ups had already left home and, in addition to her mother, there were only her sister -5 years older than her- and her father, to whom she always went to hug and protect her.
But the triggers began to increase (as usually happens) and there were times when his sister and father could also unleash a crisis.
Already a teenager, after a provocation, his mother was furious with his reaction and demanded that if he did not have anything nice to say, not to speak to him.
“That’s when I stopped talking to him. I didn’t say a single word to him for two years.”
Despite this situation, her parents never took her to therapy, and she never confronted her mother (now deceased) with the situation.
“I assumed that I was a monstrous and evil being – something very common among those who suffer from misophonia. I was not aware that it was a condition, I thought it was a flaw in my personality and I suffered in silence“.
What’s happening in the brain?
A few days ago 10 years ago, doctors Sukhinder Kumar from the University of Iowa, USA, and Tim Griffiths from the University of Newcastle, UK, conducted a study in which they reproduced an entire suite of sounds for volunteers to rank according to how bearable they were.
At the same time , they observed brain activity through magnetic resonance imaging (MRI) of those who experienced that range of sounds and the correlated with the personal evaluation they made of each sound.
What is they found it was an interaction in two key regions of the brain: the auditory cortex (the part associated with hearing) and the amygd amygdaloid wing or body, a structure generally involved in emotional processes and more specifically in the assignment of emotional or psychological valences to certain events or stimuli.
“These two regions fed each other information”, le commented to the BBC neuroscientist Phillip Gander, who continues to explore the study by his colleagues Kumar and Griffiths.
“One region said ‘I have these kinds of sounds’ and the other said ‘really I don’t like them and this is the reaction you should have’”, explained Gander, who is an expert in de University of Iowa hearing disorders.
Regarding misophonia, his research -and that of Kumar and Griffiths- indicates that the activated regions of the brain have to do with mechanisms of control and learning and, very importantly, with mechanisms that encompass the experience of our inner world.
“It is related to how our external world (perception) enters into correspondence with our inner world (interoception ) and how our brain evaluates these events”.
“My voice and my jaw”
Grace and her husband had s lucky to find a very good psychologist familiar with misophonia very close to where they live. They do family and individual sessions.
But although it has given them tools to understand Matthew, it is still a difficult situation to tackle.
“I am a restless person, I move a lot”, says Grace. “And before I speak I make an almost inaudible sound, a slight sniff that provokes my son, as can also happen when he sees my jaw moving.”
“It’s something that makes me feel horrible, it breaks my heart. There is nothing crueler than your own child running away from you, hiding in a corner and covering his face”, he details.
“What has changed with therapy is that I try to manage better the fact of constantly being the source of that repulsion”, expresses Grace.
Creative measures
The family has also reorganized the house.
Matthew occupies the third floor. He has his own bedroom, a bathroom and a large living room. He goes there immediately when he arrives from work. He does not see or speak to his mother and they communicate by text or email.
“Every night I send her a text to see how she is doing and then I usually send her a longer email in the one I tell him about our family life”.
When Matthew has something urgent to say, he stops in the corridor and Grace goes into a neighboring room from where he asks him by text if he can answer Or if you should just listen.
When he is not there, his mother goes up to the third floor to fix him up a bit . He has a notebook where he leaves messages for her and every week he puts new photos of the family, of him and of everyone together in the frames.
“It sounds ridiculous, but I try to do things to include Matthew in everyday life and remind him how much we love him and that he remains a central part of the family even if he remains on the periphery”.
One Christmas, for example, when opening presents, Matthew and his brothers went to the living room, while Grace and her husband stayed on another floor watching them on video. The children spoke to them from below, the parents answered by text.
What treatments exist?
Since it is a difficult phenomenon to diagnose and of which there is little knowledge, There are no well-developed treatments from a scientific point of view, says Dr. Zachary Rosenthal of Duke University.
“Almost everyone who has tested, have been done using some form of cognitive behavioral therapy (CBT )”, which include interventions that change patterns of thinking, learning, managing body, regulation of emotions, attention and of communication.
But misophonia is better understood as a multidisciplinary condition, the expert thinks.
“Nor should we f locate it simply in a psychiatric disorder or mental health. Seeing a cognitive behavioral therapy specialist is one part. The other would be to see to an audiologist who can assess hearing problems or processes,” he explains.
Also recommends discussing listening strategies with the patient, where devices can be worn in the ears to protect or filter selective sounds, that can help you function in their lives and control the urge to want to escape.
“It is compejo. It is not a problem that is going to be solved in one place. There are people who may need to see a neurologist. Or even an occupational therapist“.
“Navigating life” with misophonia
Diana found help later of an arduous search process.
“It took me almost two years and hundreds, if not thousands of phone calls, to find a health provider who had even heard of it,” he says. “In 2016, I went to an audiologist who examined me thoroughly and confirmed to me that she did, in fact, have misophonia.”
But since there is no coded diagnosis, her history reflects abnormal auditory perception with the subtext of misophonia.
They started with a treatment of internal hearing aids that generated noise to try to mask the sounds that disturb her, but they did not work.
“Those of us who suffer can use white, pink, brown or red (sounds of different frequencies) as a way to cope with misophonia, but those are all triggers for me”, she says.
With the additional help of a therapist she continued to look for therapies or ways to live with the condition
“After all this effort I came to the conclusion that what I need is to accept that this is part of me and that I have to navigate life in the best possible way”.
Silence and isolation
“We raise our children telling them that ‘mommy doesn’t like certain sounds,’” says Diana. “They can eat popcorn, chips or other crunchy foods, but they have to do it in another room. That has been the ‘normality’ of our lives.”
She emphasizes that her husband is very supportive of her and can generally read her very well and recognize her triggers.
But there is always a factor of unpredictability, which generates tensions in the marriage.
“Sometimes I would run away to the bedroom, get into bed and stay alone in the dark. It’s something I need”, he says.
” He wanted to be my prince charming and come to my rescue and he couldn’t understand that he needed that time for me and that if he wanted to help me he had to leave me But he already understands it, he is very respectful and does not enter my space without first asking, “he explains.
Diana practices mindfulness exercises. She likes to write, do crafts and bake.
“I have a puppy that gives me a lot of emotional support, but“ I don’t have a social life ”, she says between laughs. “That one is restricted to chatting with my best friend on Facebook. But I don’t go out and I don’t eat together with anyone”.
Diana’s puppy offers her emotional support. (Photo: Courtesy of Diana)
Unexpected hug
With the support of his family and therapist, Matthew has managed to overcome some barriers , with results that Grace admits have surprised her.
After a year of complete rupture, the family began to learn how to be reunited in the most comfortable way for Matthew. And suddenly he started texting his mother asking where he was in the house
“He looked for me and gave me a hug. It was something huge, incredible. I cried for an hour,” he says, acknowledging the price his son surely risked paying for that contact.
“That has happened four or five times in the last two years, when we came into contact for about 40 seconds, that you can hug me, tell me he loves me and then he leaves”.
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Despite the difficulties, Matthew has perspectives and motivations in his life. He is a great player squash -the sound reverberation of the ball brings you relief. He is an ambulance operator, and will soon be interviewing for a position with the Fire Department in St. Paul, Minnesota, a dream he has had since childhood, Grace shares.
“My hope is that develop a happy working life and have a family. I really want that because I feel that he didn’t have it here with us”, he expresses.
“The sad thing is that I don’t see that life includes me much, unless something changes dramatically, like my presence physical”.
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Grace is writing a book about living with misophonia, plans to publish it within a year | Diana looks forward to the graduation of her daughter, although she will only be able to see it through video | Dr. Zachary Rosenthal is director of the Duke Center for Misophonia and Emotional Regulation
www.misophonia.duke.edu | Dr. Phillip Gander is the Principal Investigator of the Auditory Cognition Group www.auditorycognition.org
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