I am 45 years old, and I suffer from hyperacusis. I live in Poland and was born in a city inhabited by over half a million people. So it’s noisy here. Three types of noise are particularly harmful: aircraft noise (including very loud military aircraft), traffic noise (i.e., street noise), and noise from music events.

In addition, most people communicate with each other by speaking too loudly, in my opinion; a large part of the population just shouts at each other instead of speaking. They also shout into smartphones. There are more and more people with hearing loss in the population than previous generations, which is due to cultural reasons (like listening to music through headphones more often than 50 years ago), an increase in exposure to noise, an increase in the world’s population and an increase in life expectancy.

I have good hearing—audiological tests confirm this. I have a physiological hearing loss, within the norm (the old, more stringent one) for a person of my age and health condition. Since childhood, I have instinctively saved my hearing. I always covered my ears when I heard loud noises. It was (and is) unthinkable for me to participate in discos, concerts with sound systems, and noisy parties. Traveling by tram can be a nightmare, as it not only squeaks and grinds when turning, but also emits electronic squeaks to signal the closing of doors.

In the worst periods, the sounds of conversations, or even the voice of a loved one, the laughter of friends, the sounds of home life, the metallic sound of the radio or TV, were and are torture.

How did it start? Basically, I don’t know. I don’t know of any acoustic trauma that would be the beginning of my condition. There was no clear boundary between life before and after hyperacusis. On the contrary, my mother told me that when I was a baby or a slightly older child, I would suddenly start crying unnaturally while walking. She couldn’t find out the reason for this for a long time. Only after some time did she notice that I suddenly started crying when, for example, a garbage collector or an excavator was working loudly nearby, or there was another noise that the other children on the street or on the playground did not pay attention to.

Once I was able to speak (and I learned quickly), I communicated fear due to noises in the house (e.g., the operation of the mixer at the neighbor’s house, who lives below, or the sound of nails being hammered).

Serious problems started at school. I studied in an old brick building from the early 20th century. It was a large building, with a tangle of vaulted, cave-like corridors in which every sound resonated. Nearly a thousand screaming children attended this school. You can imagine what I was going through. The biggest nightmare was PE lessons. They took place in a large two-story high gymnasium, which was like a huge sounding board. Every sound was torture, and when 40 students were screaming at the same time, and someone was constantly hitting the ball on the parquet, causing a prolonged cannonade, with the teacher shouting commands, and whistles all around me, as the rubber soles of hundreds of shoes were screeching on the parquet, it was a real nightmare. Pain in the ears and head (also known as noxacusis), dizziness, lightheadedness, rapid heart rate, a bursting feeling in the ears and head, and finally extreme weakness and apathy.

It took me hours to recover from such torture. Finally, I started running away from PE lessons. This caused conflicts with teachers and parents, but I never returned to those lessons. Neither in primary nor secondary school. No one understood why (and neither did I).

Apart from the symptoms above, I also experience feelings of irritability and stress when I’m exposed to noise, and hours of lingering sensitivity to sounds, which before the exposure to noise and vibrations were not so bothersome. On a long-term scale, my sensitivity and hypersensitivity are not similar. There were and are periods of much weaker tolerance. I can’t quite grasp the reasons for this difference. These ailments have been with me from an early age. However, for many years, I have not seen that others react similarly to noise. Most people naturally have a greater tolerance and can easily endure something (sounds) that can make me disabled for a long time.

I quickly became a recluse. The inability to participate in normal social life, the preference for solitude, inventing activities and searching for passions that could be pursued without exposure to sounds (not to mention noise) caused me to live in a rather hermetic world.

I was 14-18 years old then. It is important for me to emphasize that I did not realize at the time that the cause of my symptoms was hyperacusis. I was considered weird, a recluse, even conceited. But neither those around me nor I knew that the problem was hyperacusis and/or noxacusis.

I didn’t feel sick and I didn’t understand that the same sounds didn’t bother others that much. The concept of “hyperacusis” was unknown. Moreover, to this day it is “terra incognita” not only for laypeople, but also for most doctors.

It was only at a mature age, with the spread of the internet (when I was in high school, probably no one at school before my final exams in 1999 had a mobile phone), that I began to gain knowledge about my ailments and understand their nature.

Due to hyperacusis, I dropped out of college for a long time. I was able to finish only when hybrid forms of classes became popular and when, for other reasons, I also achieved an individual course of teaching. It would be impossible for me to complete my studies under normal conditions (lectures with loudspeakers, noise at the university, etc.). My first professional job—as a journalist—was so successful because I didn’t work in a newsroom. Instead it was a small room, accidentally soundproofed by traffic jams. The area where the editorial office was located was quiet and peaceful. I could even go out to the neighboring forest for a calming walk.

Unfortunately, I had to walk halfway through the city to get to work. For this reason, my return home took up to 4 hours (if I was traveling by tram, it would take an hour). I walked along circuitous roads and off-road roads, avoiding noisy streets full of cars, trams and people.

As a last resort, I boarded the tram, especially in winter, when I could dress warmly, pull a hat and scarf over my ears, and cover them with cotton wool. Unfortunately, using earplugs or over-ear headphones cause me other issues. When I use various types of earplugs or over-ear headphones, I experience fullness/air pressure in my ears and in my head. It is tiring, burdensome and difficult to bear. When I was in a hurry, I had to take a taxi from time to time.

Today I am a largely excluded person. I have to give up many projects in advance. I spend a lot of time, almost every day, in the forest, because it brings me relief. I must admit that the natural music of the forest does not irritate me, and actually helps me adapt to noise unlike others. Contrary to the accounts of some people suffering from hyperacusis that I know, the rustling of trees does not bother me, and even has a beneficial effect. Unfortunately, exposure to other noises (e.g., gradual exposure to street noise, highway noise, disco vibrations), not only does not improve tolerance, but quickly intensifies bad sensations or leads to a regression in my tolerance, pain attacks, lightheadedness and increased tinnitus.

However, the neighborhood around my house is a nightmare. There is a park outside the windows full of trees and greenery, and a playpen was built there—a mini pitch with a basket, where someone constantly hits the ball almost every day in spring and summer. This is torture. But the matter cannot be solved. You can’t move the sports pen or stop people from hitting the ball.

The second problem is the pavilion built in the park with polycarbonate walls. There is a hall inside where concerts are held. Each time, there are many hours of pounding — rhythmic thuds, vibrations—and I can actually feel my eardrums vibrating. After one of these events, I felt terrible for two days. I kept hearing this rumbling sound for 48 hours after it had lasted 6 hours in real life. This is also associated with the severity of arrhythmia and hypertension.

This activity (of this pavilion, maintained with taxpayers’ money) is a violation of the law in force in Poland. Unfortunately, this law is dead and fighting noise is very difficult. The authorities of my city are able to issue permits for commercial concerts with huge sound systems in parks, where generating noise and disturbing the peace is prohibited. No one looks at the bird breeding season, animal life, or the constitutionally and statutorily guaranteed right to peace and quiet. Moreover, no one understands the phenomenon of hyperacusis.

When I can’t leave and have to stay at home, exposed to terrible, hours-long noise generated illegally in neighboring properties, I feel like I’m being tortured. And it really is torture. The neighbors also hear the noise, but for them it is only “more or less annoying or discomfort.” For me it is pain, physical suffering and, consequently, mental suffering, which lasts for many hours after a session of such pounding.

After experiencing such long-lasting noise, my many days of efforts to “desensitize” myself a bit and adapt to background sounds are ruined. My symptoms intensify after such a series of noises: I experience autophony. I painfully feel the sound of my own breathing, heartbeat, the sound of my own voice, which I hear as if I had a bucket on my head. The heartbeat “vibrates” directly on the eardrum. I feel the buzzing of the eardrum in my ear. The audiologist told me it was probably PET, patulous eustachian tube. I also suffer from tinnitus. The intensity becomes unbearable after long exposures to noise (e.g., street noise or the above-mentioned neighborhood rumbles).

The audiologist diagnosed me with tinnitus, hyperacusis and noxacusis, and believes my hyperacusis is central or central-peripheral. The audiologist also suspected I suffer from patulous eustachian tube (PET). I am pre-qualified for tinnitus retraining therapy (TRT). I have not tried TRT yet as I’m afraid it will worsen me, given what I have read from other sufferers.

My condition is undulating. There are times when I can endure the noise with less suffering, and there are times when I am almost completely disabled: I can barely perform basic activities. Unfortunately, hyperacusis also caused reactive phonophobia. I am afraid of sounds and get stressed by anticipatory thoughts about noise when I know it is potentially possible. Nevertheless, I would describe both symptoms as moderate. I know others suffer more. My noise management strategies give me 10 to 50% relief, which I consider a success.

Unfortunately, they come at a high social and financial cost. “Desensitization” takes a lot of time, isolates me from many activities and people, and limits my activity, access to cultural goods, mobility and the ability to earn money. What’s worse is that hyperacusis is not included in the official lists of diseases, and I do not know of any case where it became the basis for issuing a disability certificate (such a status gives a chance for certain power and rehabilitation in society). Fortunately, I love the forest and quiet libraries and I have my own “survival strategies.”

However, I believe that a global information and social campaign is needed about the negative impact of noise on life on earth, on animals, and as—the latest data shows—also on plants. Not to mention how much noise harms human health. The European Union—to which my country, Poland, belongs—indicates that noise is the second largest factor of environmental pollution. Every year in Europe, at least tens of thousands of people die from noise-related diseases. Meanwhile, city authorities organize loud concerts, encouraging people to participate in them.

I am afraid of noise and many people consider it abnormal and stigmatize me. Meanwhile, noise is an objective evil. And many people not only are not afraid of it, but even approve of it. However, people are afraid of silence. I know why it is like that, but I don’t want to psychoanalyze.

At the beginning, I wrote that I do not remember any acoustic trauma or health event after which I suddenly developed tinnitus and auditory hypersensitivity. They were always behind me. According to my mother, as a child, when I couldn’t speak, I would cry in strange circumstances. Only after some time did my mother notice that it was caused by noise or louder sounds. For years I didn’t understand this disease and couldn’t name it. I assume I have suffered from it since the beginning of my life.

And here comes a certain reflection. More than 20 years before I was born, my Dad, then 22 years old, took part in the first social protest of Poles against the communist totalitarian system after World War II. It was in Poznań in 1956. He was then illegally imprisoned by the communist secret police. Only recently I learned that, among other tortures, he was subjected to noise torture. Unfortunately, my Dad, who would be 90 years old today, has been dead for 35 years. I can’t talk to him about it anymore.

But I know of research on the possible epigenetic inheritance of the effects of trauma. The child or grandchild of someone who has suffered PTSD may inherit some of the effects of that trauma. The DNA itself does not change, but certain chemical groups (e.g., methyl or acetyl) are attached to histones, which are a specific carrier of trauma. The unaware child may then be burdened with the very detailed traumatic experiences of his or her ancestor and may also be more susceptible to PTSD.

Who knows whether some cases of hyperacusis are not related to a similar epigenetic mechanism. Despite my condition, I did a lot for my city socially. When I was 21, I found out that the city authorities and developers wanted to develop the largest, hundred-hectare park in the city. I organized a social protest that lasted almost a year. Hundreds of people, specialists, various organizations joined me, and we managed to protect this park. Today I can relax there in silence, resting from hyperacusis. For years, I have been working for nature conservation, protection of monuments, historical memory and promotion of sightseeing, despite this disease.

Finally, I would like to say that I have found my little coping strategy for hyperacusis: frequent stays in the forest (dendrotherapy and forest therapy), avoiding noise, mindfulness, stays in a quiet library. I also do not use the phone, headphones, speakers, etc. Unfortunately, I know that I won’t be able to avoid noise completely, but I try not to worry about it, until another relapse or exacerbation of the disease occurs. I know that it may come to the end that I will end my life locked in a soundproof apartment, like Marcel Proust. But maybe I’ll at least write a book then.