During my years at "20/20," I have never had to conduct an interview like this. First, taking off my shoes, then all my jewelry, and then going into a room that was completely padded. Why? Well, just... See More
During my years at "20/20," I have never had to conduct an interview like this. First, taking off my shoes, then all my jewelry, and then going into a room that was completely padded. Why? Well, just take a look, and especially a listen. For Joyce Cohen, a leisurely stroll down a New York City street is a landmine filled, anxiety ridden trek. Even wearing industrial grade ear protection she calls earmuffs, Joyce is on high alert for sirens and squealing kids, high heels and honks, manhole covers and motorcycles. Do you go everywhere in these earmuffs? I mean, do you ever go out without them? Almost never. It's too hazardous. Reporter: Even with sounds muffled, a doorman hailing a taxi sends Joyce reeling. Oh, my god. Reporter: Joyce's strange affliction is an auditory condition called hyperacusis. For her, everyday noises are agonizingly loud and cause horrific pain. You once wrote that, it feels like your ears were being filled with burning acid. That sounds pretty awful. I felt as though my entire head was being crushed. Reporter: To limit noise during our interview, we took precautions. A carpeted hotel room. Mats to absorb sound. Phones silenced and equipment secured. Despite that, Joyce and her husband Ben encountered a squeaky door we hadn't even noticed. And believe it or not, they carry their own wd40 just for such situations. To meet them, I removed my bracelets which could jangle, and my shoes which could click. Joyce and Ben both suffer from a severe form of hyperacusis. So, how did two people with such a rare condition find each other? They first bonded on an online support group. It is okay for me to talk this loud? Yes, uh-huh. Reporter: Joyce, a writer, says her symptoms developed six years ago after prolonged exposure to a loud ventilation system. I felt a wave of pressure descend upon my head, and I knew something terrible had happened, but they didn't know what. I was just delirious with pain. Reporter: Ben, a former banking consultant, says decades of going to loud concerts set the stage for his condition -- but the final trigger was a loud, squeaky printer at his office. One day, I woke up and everything was a hundred times louder. Reporter: Can you describe what the pain feels like? Like somebody lathe match and threw it into my ear. Reporter: Their threshold for sound is now incredibly low. Imagine the sound of a cat's meow, like a lion's roar. Running water, niagara falls. A bird chirping? Think "The birds." My example was, you know the horror movie where the bad guy calls and the call is coming from inside the house? We traced the call. It's coming from inside the house. You hear me? It's coming from inside the house! It's like you have your own little horror movie inside your head. Reporter: Inside their apartment, they've created their own fortress of solitude. This is what the window is like. Reporter: The windows are soundproofed and covered with acoustical quilt. The door buzzer has been muffled. Joyce has croqueted dividers to prevent clanging plates. Even the sound of Ben's voice puts Joyce on edge, so she shushes him constantly. Say, very quickly. Reporter: Back at our interview, safely inside, 29 floors up, the distant sound of a siren is cause for alarm. Reporter: If it's getting close, you can just put your headphones on -- It's done. It's done? Okay. Reporter: So, why live in new York City where sirens are a 24-hour -- No place is safe. In the suburbs, there are lawnmowers, there are leaf blowers, there are barking dogs, there's cicadas. Reporter: And everywhere, there are children. 600 miles away, Eric, a suburban dad in North Carolina, knows what Joyce and Ben are going through. Hyperacusis made the sounds he loves the most, the high pitched voices of his sons, unbearable. We can't scream near him or shout very loudly at him. After they say something loud, they'll apologize to me. But I mean, they're kids. What are they going to do? They're going to be kids. We felt sad for daddy. Reporter: Eric, a financial analyst, says his hyperacusis began after mowing the lawn while listening to loud music. As soon as I cut off the lawnmower, I knew something was wrong. Reporter: He now wears ear protection to ward off the sounds of playing and for praying, but forget hearing the church choir. For Eric, silence is next to godliness. Hyperacusis, especially with pain, remains a medical mystery. Like another puzzling auditory condition we've covered, misophonia, a hatred of certain sounds. For that story, I spoke to Kelly Ripa. She suffers from a mild form. If my husband eats a peach, I have to leave the room. Reporter: You have to leave the room. I have to leave the room. Reporter: This teenager has such a severe case, she couldn't talk to her own mother. Can you give me a list now of all the things that your mom can't do around you? Eat, chew, breathe heavily. Reporter: It was amazing how many people in her life thought she was just kooky. That this was a psychological disorder. A lot of people think that about this condition, too, and that you have noise phobia. Reporter: Or that you're a hypochondriac, or hyper-sensitive? Yeah. That it's an emotional problem. It's not an emotional problem. Reporter: What do your friends and family think of this? Do some of them think you're crazy? Yes. Well, nobody understands. Reporter: Not even some doctors. One of the pieces of advice was to go for psychological counseling and stress reduction techniques were suggested. Which is, of course, absurd. Reporter: Well, they clearly think it's all in your head. Yes. Yeah, they do. Reporter: In this is pretty quiet, right? Harvard professor Charles Liberman is a leading expert in auditory neuroscience at Massachusetts eye and ear infirmary. He says hyperacusis with pain is real. There are clearly many, many people who suffer from this. And their descriptions are all remarkably similar. Reporter: He says hyperacusis is still a mystery, but might stem from a malfunction of pain fibers in the ear. He says Numbers of people who suffer from it are on the rise. We're living in a noisier and noisier world. So, that starts to hurt. Reporte and the odds of it happening are starting to go up. Reporter: Ben wishes he had worn ear protection in his concert going days. Now, he cannot wear ear muffs, the pressure hurts his ears. Utterly defenseless to noise, except for our interview and doctor's appointments, he now never leaves his apartment. But there's no real escape. I've got to leave for siren. Reporter: The sound of a siren outside sends him into an inner room. The silver lining is right here, though. Reporter: For Joyce and Ben, their saving grace has been finding each other. Although nothing about their romance has been typical. We had a tiny wedding in a quiet, carpeted room. There was no music. And we had paper plates. We never raise our voices to each other. We're very lucky to have found each other. Reporter: Their life together is a daily quest for silence, more research, and perhaps one day, a cure. What do each of you miss the most? Walking down the street and talking to someone. We go to our neighbor's rooftop, and see the Manhattan skyline. It's just so incredible. I miss being able to do that.
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