Hyperacusis is so surreal and beyond the comprehension of anyone who isn’t experiencing it firsthand. I can’t count the number of times people have said, “Hey, have you tried earplugs or noise-cancelling headphones”? To be fair to them, I doubt I could ever understand this without experiencing it, either.
I was an aspiring jazz musician until six years ago, and was practicing piano and saxophone very seriously. I was overzealous with the practice routine at one point, and injured my index finger, which kept me out of commission for about eight weeks. In my infinite (lack of) wisdom, I decided that since I couldn’t play, I would listen to music for 10 hours a day to try to absorb it into my mind as best I could.
I did this through headphones, at too loud a volume for too long, and the audio quality was poor. These were mostly 1950’s jazz recordings. After a few weeks, I woke up one day to a strange pain that felt like a sharp pinprick pressing into my eardrum.
While this was alarming, it wasn’t severe enough for me to understand how seriously damaged I was. I just felt a persistent and growing annoyance that I couldn’t listen to music through my headphones without this pain resurfacing.
I did some light Google research. I was extremely optimistic and looked for the most encouraging explanation, so I incorrectly determined that I ruptured an eardrum. I was devastated to read that I might be unable to listen to music for the next six to eight weeks until it healed. I could not have imagined anything worse. It’s ironic to look back on that now.
But I wasn’t healing in the time frame I hoped I would. Of course, it wasn’t a ruptured eardrum, and the reality — that it was a noise injury — was far worse. The inconvenience officially turned into a living nightmare when my mom visited two weeks later. Despite specifically mentioning my ear sensitivity and asking her to be as quiet as possible, she accidentally dropped a pot directly in front of me in the kitchen, making probably the loudest sound I’ve ever heard in my house. I felt something break inside my head.
At that point, it was over. I had full-blown noxacusis, to the extent that even the tap of a fork on a plate felt like a needle stabbing me through the ear all the way down to the inside of my skull.
Over the coming weeks, it continued to worsen. I couldn’t listen to any form of music or audio at even barely audible whisper-level volumes. Every minor sound from outside the house would penetrate my ears and cause excruciating pain, pain like I have never experienced in my life.
I have a burning, stabbing pain when exposed to bad sounds. But even when exposed to milder sounds, I have brutal reactive tinnitus. The more aggravating the sound, the louder my tinnitus becomes.
I even discovered, to my horror, that the supersonic frequencies emitted from the hardware of electronics had an effect on my ears, making them ache and feel full of pressure, so I couldn’t even watch TV on mute or use my computer.
I’ve been essentially limited to my phone and tablet, for reasons I still have no understanding of, but the hardware on those doesn’t create the same aggravating frequencies as the computer. However, if I try to play any kind of game that taxes the hardware on the phone, I still do get ear pain and must immediately stop.
Basically, my life ended that day, and I’ve been in pure survival mode for the last six years. I had so many dreams and now my whole life is about having hyperacusis. There is nobody who can understand what it’s like, and even the people who can understand can’t handle it. It affects not only yourself but everyone around you.
I’m lucky in that my grandma lets me live in her house rent-free (she lives with my parents now because she’s elderly). I live in Silicon Valley. There’s a lot of construction in the neighborhood, and when there is a noise, I have to run away. I run into the street. I will sit in the street for hours and hope the sound goes away. I don’t have a car. I order groceries online and have them delivered.
Essentially, my life is over in every meaningful sense.
I can’t travel. I can’t work. And I actually developed a “hyperacusis-like” issue in my eyes two years ago, where extensive reading/eye-focus on both paper and screen causes pain in my eyes. I can read only about five pages’ worth of stuff before the strain starts, so I’m no longer able to enjoy a good book or do any form of remote work. This of course is a reason to believe that there is some problem going on neurologically. When I read, my eyes must perform some kind of fine motor skill to scan the page, and that level of focus strains my eyes within minutes.
On top of that, hyperacusis is truly one of the most inconvenient, crippling disorders to have, because you can’t prove you have it. Which means no financial support from the government.
I live in fear of dental problems, because I absolutely cannot endure even two seconds of a dental drill. I basically exist only to survive until the next day. There’s no sense of purpose or meaning left in living like this.
For four years it was unquestionably impossible to get back into the outside world, even wearing double ear protection. Some minor good news is that my condition has slightly improved — from brutal, agonizing pain at all times, to pain only when louder sounds occur, and bad reactive tinnitus to minor sounds.
So I can now do small things like talk on the phone and go on late-night walks when it’s quiet. But I still can’t live any semblance of a normal life.
The very worst thing about this situation is that I am deprived of love. I was a fairly normal person before all this, with passions, hopes and dreams. I always wanted to meet a partner, have kids and build a life. But now I’m 32, having been stuck in a box for six years and counting, and I’m realizing that it’s possible I’m going to be alone forever, until I get sicker and die. This is not the kind of life anyone would choose or expect for themselves.
I can’t even meet new friends, and the ones I have left from my pre-hyperacusis life don’t live near me anymore. I am so lonely. So I am in this strange situation where I’m a social, people-loving person who may grow old without ever having met hardly anyone.
I was pretty lucky to meet my former girlfriend online, and she came to visit me often over the course of our 2.5-year long-distance relationship. She kept me going for so long. But I could never take her out or travel with her. I could never do anything beyond having her come over to my house.
I don’t see that being an easily repeatable experience, to find someone else willing to do the same. Nor should she. Being with me at this point would be an unfair prospect for anyone. I don’t know what to do with myself anymore. I’m entirely alone and nobody is coming to save me.