I have hyperacusis. Here's what it's like.
When noise causes pain and injury, constant planning is required
Joyce acquired hyperacusis, or noise-induced pain, after an acoustic trauma 15 years ago. She lives in New York City with her husband. These vignettes are from a typical day showing how ordinary sounds are not just painful, but can make her hyperacusis worse.
Rise and shine! It’s time to attack the day. There’s no need for an alarm clock to wake me early. I am self-employed because I can’t go to a normal workplace. Ordinary, everyday sounds are both painful and injurious. So I freelance from home and set my own hours.
I know someone who was forced to quit her job in an otherwise tolerable office because construction started across the street. Ditto with a teacher whose ears became more sensitive when he tried to project his voice in a hard-surfaced classroom. And a dental hygienist who was fired after being injured by prolonged exposure to a whirring, whining ultrasonic scaler.
Almost everyone with hyperacusis is retired, disabled, unemployed or self-employed. Working in a regular workplace, with normal levels of noise, is impossible. Noise—surprise noise, injurious noise, uncontrollable noise—is everywhere. This injury ruins people’s lives in ways both profound and banal.
My noise injury was caused by years of loud workplace ventilation, which sounded like a vacuum cleaner running nonstop. Mine is a textbook case—it has improved over time, because I am careful to avoid or protect myself from all sounds that are uncomfortable or painful. Still, it’s hard to be careful enough: This injury worsens from ordinary sound, ordinary life.
For a few years after my noise injury, I had to wear earplugs in the shower, because the sound of running water was painful, but by remaining in quiet settings I have healed enough to tolerate the shower. Tiled bathrooms are acoustically harsh, but ours contains a terrycloth shower curtain, a rug on the floor, big towels draped across five towel racks, and a hook on the door with a bathrobe. The soft surfaces absorb sound.
'We have earmuffs scattered throughout our home'
Our apartment, despite its location in a noisy city, is typically very quiet. We added soundproof windows, which obliterate most outside noise, and replaced our interior doors with solid wood doors, which make a huge difference in blocking noise between rooms. We are lucky enough to have a wonderful upstairs neighbor. Her floors are covered by plush rugs with felted padding beneath, which completely eradicates her footsteps. We do on occasion hear her vacuum.
Cats! They like Friskies. The can comes with a metallic pop top, so I throw on my protective earmuffs. We have earmuffs scattered throughout our home, so a pair is always at hand. Food packaging—like crumply bags and plastic containers, with that percussive snap—is hard to tolerate. Some people with hyperacusis can’t eat crunchy foods like potato chips or carrots.
Fortunately, the cats rarely meow, since a meow feels like a needle piercing my eardrum. Their purr, however, is soothing to me.
Brunch: I make scrambled eggs and, again, throw on my earmuffs while I crack the eggs. (Cooking tip: Whack the shell with the flat of the knife, which avoids shards getting in the egg.) We eat from silicone bowls and paper plates, avoiding glass and metal as much as possible. I know so many people with hyperacusis who have been injured by clanking dishware.
'I plan my excursion like a military operation'
The microwave door makes a loud click, but at least our microwave has “silent mode,” which eliminates the beeps. It’s advertised with a picture of a sleeping baby. Our old microwave emitted five piercing beeps when the food was done, so we had to watch it carefully to unlatch it before it ticked down.
Check email: For about two years post-injury, typing on the computer keyboard was uncomfortable, but I am OK now with those tapping sounds. I read the news online, too. The rustle of newspaper pages used to be painful.
Fortunately, I was always able to talk on the phone. Not everyone with hyperacusis can. Cell phones often have harsh acoustics and even harsher rings. The Internet, of course, is a lifesaver—it has allowed me to work remotely and also connected me to a community of others with this rare, unseen injury. They are the only ones who really understand.
Eye doctor appointment: I plan my excursion like a military operation. The office is nearby, but I wear earplugs and earmuffs on my walk there—as I do every time I leave our quiet home in this noisy city—lest I encounter a damaging noise. The noise could be anything—a barking dog, a street musician, a revving motorcycle, a kid bouncing a basketball, or the general thrum of the city. There are endless sources of risk.
I leave home only late in the day, when there is less chance of encountering construction, which I dodge when I see it. In the city, there is little risk of lawn-care equipment, though I have seen some doormen using leaf blowers on the sidewalk. But even a walk in a tranquil park means birdsong and snapping twigs. Nature is hardly quiet. Because every outing everywhere carries a risk of noise, my ears are always protected outside.
A siren screams in the distance. I duck into a nearby store and stay there until it passes.
'It makes my tinnitus worse, too'
For doctor appointments, people who drive usually wait in their cars to avoid the waiting room. Waiting rooms—all public places really—are full of conversations, footsteps, sneezes, ringing phones, whirring machinery — in other words, ordinary sounds of every sort that most people would never consider injurious.
The optometrist’s waiting room is near the back office, and the door squeaks each time a staffer enters or exits. Those piercing high pitches cut right through my ear protection. At my request, the staff props the door open.
What nobody understands is that the noise is not just painful in the moment. Too much exposure to this kind of noise causes a setback—increased sensitivity and a burning, aching fullness deep within my ears that can last for days or weeks. It makes my tinnitus worse, too.
The eye doc is annoyed because it’s difficult for me to hear him while wearing ear protection. I can’t take my earmuffs off, because the surfaces are hard and the acoustics harsh. So he must repeat himself. A lot. Choosing eyeglass frames is tough. I can't easily try them on while wearing earmuffs. Earplugs alone aren’t nearly enough in this risky sound setting. There’s little compassion for this condition, and a lot of annoyance with it.
As for doctors, when I encounter a doctor I say I had an injury they’ve never heard of. “Try me,” they reply. And when I tell them, they say, “I’ve never heard of that.”
Grocery store: Because I am wearing earplugs and earmuffs, the ubiquitous checkout beeps are tolerable, as are the throbbing refrigerator cases. Worst of all are the stockboys with their hand trucks full of boxes that they drop on the floor. Thud!
Dinner: The kitchen, like the rest of our home, is covered with soft surfaces — a rug on the floor, placemats on the counters, shelf liner on the shelves.
Kitchen is a 'hazard zone'
Tonight we are having roasted salmon and vegetables. I have a sharp chef’s knife and a wooden cutting board, but I still need to chop, so I keep my earmuffs on. Earmuffs are always necessary when cooking. There is no way to avoid metal pots and pans. The kitchen is a true hazard zone for those with hyperacusis. Fortunately, we have non-computerized appliances — our basic refrigerator doesn’t beep when the door is left ajar, nor does our vintage stove beep when there is a temperature issue.
Jeopardy! I like Jeopardy because the volume is consistent. Still, I keep the volume low, watching with remote in hand. Jeopardy is followed by Wheel of Fortune, which I don’t watch, partly because of the unpleasant ding ding ding when Vanna turns the letters, and partly because it bores me. I always watch television with captions. While watching, I must stay alert, ready to mute the volume whenever there might be a bleep or sudden sound effect.
Bedtime: We recently got new bedding, and the cotton duvet cover crackled. So I washed it often to soften it. Crackly or swishy fabrics, and zippers and snaps, can be uncomfortably loud. Tinnitus keeps some people up at night, but fortunately I am able to sleep. The night is quiet, and sleep is an escape.