When I developed hyperacusis and tinnitus in 2019, I quickly lost everything. Over a two year period, I fought to reclaim most of it, only to have it all slip away once again from a seemingly innocuous noise incident. This tempestuous cycle of easy losses and hard-won gains has worn on me, both mentally and physically. Throughout my journey, I’ve had my conditions and struggles due to them discounted and dismissed by many, further exacerbating the toll these conditions have taken on me.

My immediate family are some of the biggest perpetrators. Whenever I reach out for accommodation or support, I find myself being attacked, gaslit, or given the cold shoulder. I’ve been pressured to seek employment when I can barely function on a day-to-day basis around any type of sound. I’ve been told the world doesn’t revolve around me whenever I request people be quieter due to the intense and long-lasting pain the noise they make causes me. I’ve been refused assistance with setting up medical appointments with new care providers, who I am unable to contact via an app because I’m not an established patient. I’ve had my hyperacusis and concerns due to it called my phobias, framing my issues as completely psychological. I’ve been encouraged to take off my hearing protection and push through the pain — complete disregard for the likelihood of it worsening my condition. When I was still taking care of my children, I was repeatedly refused any assistance in doing so, though I was becoming more limited by the day. This treatment has created a huge rift between myself and my family, and I no longer look at them the same, or hold them in the same regard as I did prior to my illness.

Happy and healthy with my children

Friends seem completely unable to grasp my inability to do basic things. They’ve asked me to come visit them when I can’t even leave my house, much less drive extended distances. They’ve insisted on coming to visit me, though I’ve explained how I am forced to isolate nearly 24/7 to avoid pain from exposure to noise. They’ve pushed me to talk on the phone instead of text, though I’ve expressed how artificial audio causes me immediate pain and spikes my tinnitus. They’ve wanted to talk about new music that has been released when, again, I can’t tolerate any artificial audio. Eventually, I grow tired of explaining and reexplaining my limitations, and fielding their unrealistic requests, so I cease communication.

My children’s school wasn’t accommodating of my limitations at all. They refused to let my three children ride the same bus to and from school, due to my two sons having IEP’s and being placed on the special education bus. Getting my daughter onto a bus required transporting her to the bus stop at the end of the road and waiting for the bus, whereas my son’s bus came directly to our house. Taking her to the bus stop exposed me to just as much noise as transporting the kids to school myself since the school was not very far from our residence. The office refused to text me with any matters related to my children, insisting on calling me, even though I explained to them I couldn’t speak on the phone. These issues contributed to my condition worsening since I was forced to expose to large doses of noise to get my children to and from school daily, and address communications.

My experience with the medical community has been disheartening. I’ve had two doctors urge me not to use hearing protection in public settings. They insisted it was preventing me from healing and that everyday noise is not harmful. When my pain hyperacusis got so severe I became homebound, my otolaryngologist’s office refused to accommodate me with any form of chat communication. They insisted on a phone call. They also didn’t recommend taking advantage of a relay service as an option. When I explained I was homebound from sound causing pain, they immediately requested I come into the office for an audiogram. I expressed concern with pumping sound directly into my already fragile ears, then asked what the results of a hearing test would mean as far as treatment options. My doctor admitted that the test would have no bearing on treating my condition. When I refused the test I was referred to seek psychological and psychiatric services. No alternative diagnostics were suggested. In addition, no pain management options were offered. In my experience with these conditions, when doctors don’t have the answers, they place blame on a patient’s mental state and anxiety level, then pass the buck.

Sadly, in support communities there are toxic dynamics. Many people who have experienced success in recovering from hyperacusis — via sound therapy and weaning off using hearing protection — push a narrative that their treatment will work for everyone. Anyone whose experience contradicts that narrative is written off, with their failure being attributed to mental state and level of anxiety. There are several different types of hyperacusis and various degrees of severity spoken of in the medical literature, so a one-size-fits-all treatment is not realistic. I’ve tried sound therapy and gradually cutting back on wearing hearing protection, with both leading to me progressively worsening.

Tinnitus has a similar toxic rhetoric surrounding it. A lot of people tout habituation as a solution, saying they were able to achieve it and move on with their lives, and that everyone else should be able to also. They don’t take into account that tinnitus is highly variable in presentation. It can manifest itself as many different volumes and many different tones. Some of those tones can even cause people to experience physical sensations, like their body vibrating or feelings of pain, as if they’re being shocked. Some people have a consistent tinnitus tone, while others experience a cacophony of them with seemingly no limit in number. Some people’s tinnitus remains a single volume, while others have variable tinnitus that can change volume regularly. There is reactive tinnitus, which can cause the volume of a person’s tinnitus to fluctuate wildly from sounds they hear. Even within reactive tinnitus there are subtypes. Some people experience an increase in volume only for the duration of the trigger sound they are being exposed to, while others experience an increase that has no definitive timeframe for when it will relent. Over the past 3.5 years, I’ve personally experienced many of the worst-case manifestations of tinnitus. Thankfully, my tinnitus has calmed down substantially over time. However, I fully know what it is like to be unable to habituate due to various compounding factors.

When these mentally and physically harmful approaches are taken by others in all walks of life, they put me on the defensive and can lead to confrontations, which only serve to exacerbate the issues I initially sought support for. This leads me to seek further isolation, when I am already forced by my conditions to stay confined to a single room the majority of my time. I am much more prone to being irritable, pessimistic, and emotionally flat because I’ve lost faith in people’s good will and grown disillusioned with how I am treated.

Isolated in 24/7 hearing protection

Written by Scott Bailes