Hear, there, everywhere: What it’s like to live with misophonia

Everyday sounds like chewing, typing and clinking cutlery can trigger anxiety (and rage) in those with the condition. It can get really lonely, they say.

Sitting in her room, tears streaming down her face, Kritika Nayyar Googled: “I get so mad and frustrated when I hear someone chewing. What’s wrong with me?”.

Krittika Nayyar, 20, is living with misophonia, and describes herself as chatty and extroverted. ‘But I often say no to parties and dinner plans, because it’s not always possible to explain the challenges or manage them,’ she says.

She had just had another fight with her mother. She had spent years hearing the words “How could you be so rude?” and “What’s wrong with you today?”

Except, it wasn’t any specific day. All the time, regular sounds — of chewing, clinking cutlery or clicking keys on a keyboard — drove her into a rage. She became known in the extended family as rude and rebellious, someone who always had earphones plugged in, and stormed out of rooms for no reason.

That day three years ago, the Google search led her to pages filled with similar experiences from around the world. And finally, a word for what she felt: misophonia.

“In that moment, I felt some validation,” says Nayyar, 20, now a student of psychology at the University of British Columbia in Canada.

Misophonia is a neuropsychological condition in which certain sounds trigger intense emotional and physiological responses, which register as rage and anxiety, often accompanied by pressure in the chest, arms and head, or clenched, tightened and tense muscles. The term itself is only two decades old, having been coined in 2001. So even in the mental-health field, professionals are still formulating definitions and approaches.

The term was coined by Polish-American researchers Pawel J Jastreboff (a neuroscientist) and Margaret M Jastreboff (a cell biologist), while working with patients of hyperacusis (who register some sounds too loudly). With some such patients, they wrote in their research papers, it wasn’t a question of volume; certain repetitive, pattern-based sounds, at any volume, sparked an unusual and extreme emotional response.

“People with misophonia typically experience increased, unusual activation in areas of the brain such as the temporal lobe, amygdala, hippocampus and prefrontal cortex,” says Prashanth Prabhu, an assistant professor with the department of audiology at the All India Institute of Speech and Hearing (AIISH), Mysuru. Prabhu has been researching misophonia since 2019 and is part of the International Misophonia Research Network set up in 2015.

Nayyar first noticed her response when she was 13. “People would say, ‘Just ignore it’, but that was impossible for me to do,” she says.

Her father, Ravi Nayyar, 47, a sales and marketing executive, says it has been a learning curve for the family. “We didn’t know about the condition. We kept thinking it was an attitude problem or tantrum,” he says. If guests came visiting, it was challenging to explain why Nayyar would have to eat in her room, or keep her earphones on. “Now, as I learn from her and read about it, I don’t hesitate to explain things to others. When we, as a family, started accepting it, we realised it wasn’t too difficult to take a stand in front of others.”

In Canada, Nayyar has found a network of support too. Struggling to contend with the clicking of laptop keys in her classroom, she approached the campus’s Disability Resource Centre (DRC) and they helped her access high-end noise-cancellation headphones. She has also been using a smaller, often personal, exam room for tests. Her flatmates have pitched in with suggestions for white noise records that help drown out trigger sounds around the house.

In the US, mental-health professionals are lobbying to have misophonia listed by that country’s Diagnostic and Statistical Manual of Mental Disorders (DSM), the global handbook for this medical field.

For now, Nayyar plans to start cognitive behavioural therapy (CBT) with Prabhu, who is a certified CBT therapist for misophonia. “CBT is not something that treats this; no treatment plans have proven successful yet. But it can help the individual cope,” Prabhu says.

Meanwhile, the condition is already shaping her life. Nayyar describes herself as chatty and extroverted, but often says no to parties and dinner plans because “it’s not always possible to explain the challenges or manage them”. Her experience of the condition has also made her want to dig deeper, and she plans to pursue a Master’s degree in psychology, with a minor in audiology. “It can be such a lonely, alienating experience. It doesn’t need to be,” she says.