It started when he was a boy: Jeffrey Scott Gould found himself tensing inexplicably when a classmate sniffled.
Later, when his cousin wore flip-flops at the pool, he found her footfalls unbearable. As a teenager, he begged his stepmother not to put carrots in the salad; his heart raced when his grandfather chomped.
Gould assumed that his testy reaction to such benign noises was nothing more than a personality quirk. Then a friend saw a news report about a neurological disorder called misophonia and told him: “There’s a name for what you have.”
Gould was reduced to tears. He realized, at last, that he was not weird, not crazy, and not alone. Now, he’s aiming to get the message out to the world with a documentary, “Quiet Please…,” which shows just how excruciating and lonely it can be to live with the condition. The film premieres Saturday in New York City.
Misophonia, sometimes called selective sound sensitivity syndrome or 4S, is a baffling and bizarre disorder. Patients feel an instantaneous, overwhelming, and uncontrollable rage — often accompanied by physiological responses such as sweaty palms or a racing heart — to certain sounds.
These triggers are often chewing and eating sounds, sometimes barely audible. Some people report visual triggers such as fidgeting or foot-bobbing, or even olfactory or tactile triggers.
Like other rare disorders, misophonia came to light with the help of social media, as patients who spent decades in isolation were at last able to find one another online. The largest of several Facebook (FB) support groups has more than 10,000 members.
Much about misophonia is still unknown: It’s not even clear just how rare it is. The disorder appears stubbornly resistant to treatment.
When the first articles about misophonia began appearing several years ago, doubters heaped scorn on the very idea of a disorder that makes the sound of chewing unbearable. But for people with the condition, seeing it acknowledged in the mainstream press was a relief.
Last year, Dr. Barron Lerner wrote about his misophonia in the New York Times. He was stunned when his story logged more than 1,100 comments and hundreds of emails. His professional credentials, as an internist and professor at New York University Langone School of Medicine, validated the disorder for many readers.
Lerner says he has a relatively mild case of misophonia, but it still wreaks some havoc in his life. He struggles with discomfort on public transportation “where people don’t blow their nose and are sniffing their mucus back into their nostrils and snorting,” he said.
“I still sometimes carry Kleenex with me when I go on planes, and politely say, ‘Do you mind blowing your nose?’” he said. “That is rarely appreciated.”
He knows others have it far worse. “I wish someone with a severe form of this disease had written this article,” one reader commented. “When someone opens a bag of chips in my office, I want to cry.”
‘I am not a nutcase’
Michael Mannino’s misophonia was so bad, it forced him to move.
His neighborhood in Miami featured so many triggering noises that he’d have to rush to his car “and “bang the seat and the steering wheel” to try to relieve the anguish, he said. “There were times it got so bad I would break down crying.”
Even the sound of his wife brushing her teeth can trigger such a rage in Mannino, a doctoral student in neuroscience, that he feels like driving his fist through the wall, he said. In their new condominium, his bathroom is far away from hers.
When he learned what misophonia was, Mannino said he felt deeply relieved: “I am not a nutcase. There is something legitimately wrong with me.”
But what, exactly?
Science has no answers.
One of the few studies on misophonia, published in Frontiers in Human Neuroscience in 2013, confirmed a physiological “skin conductance response” — sweaty palms — when people with the disorder were exposed to triggers. Some researchers suggest there is enhanced connectivity between certain regions of the brain in people with misophonia. But no one knows for sure.
So people with the disorder are left to experiment with often contradictory treatments and management strategies: antidepressants, supplements, neurofeedback, avoidance, exposure, earplugs, white noise, soundproofing.
Though some people with misophonia say they learn to cope, many report their triggers multiply over time and their reactions intensify.
That prospect terrifies Kathy Lundy, who lives near Raleigh, N.C. At first she thought it was a phase when her preteen son was bothered by chewing sounds. The internet told her otherwise. “Once we saw the words ‘No cure,’ our entire world changed,” she said. “Nothing I read gives me any hope.”
Filmmaker Gould compares the condition to an autoimmune disease when the body turns on itself. “My heart starts racing and I have a sudden feeling of anger with a side of disgust,” he said. “It’s like an adrenaline burst. It’s a physiological change in my body I cannot control. You never get used to it.”
Gould, who’s from New Jersey, raised almost $34,000 on the crowdfunding site IndieGogo to fund his documentary. Making the film was distressing, in part, because as he traveled the country to interview patients with misophonia, he spent six months listening to people cry. “Sniffling was my first and worst trigger,” he said.
When he got home and reviewed his footage, he edited out hundreds of sniffles.