Whether you are someone newly diagnosed, undiagnosed, or have been living with noise induced pain for several years the combination of the pain mixed with being misunderstood being the medical field and society can feel unbearable at times. When this miserable combination lasts long enough, for years, it seems truly as though things will never get better. There seems no way to escape from the endless excruciating pain, no way to convince your doctors and other people in your life that it is even a physical condition and you need quiet. This is when so many people lose hope, they may even begin to question what “the point of living is” if they are just going to have to endure this suffering indefinitely. Unfortunately this questioning of life as a result of constant severe pain combined with not being believed, doesn’t only happen to adults with severe hyperacusis, but children and teenagers as well.
When I was 11 years old, I had lived with hyperacusis for 5 years. Over the course of those five years my life was a repeated cycle: I had been repeatedly forced to attend school which caused me extreme lingering physical pain, been subjected to 3 sound exposure plans which increased my pain and worsened my hyperacusis, constantly not believed that I got physical pain from sounds, treated by most therapists, doctors, and other adults as though my hyperacusis with pain was an emotional disorder. I felt as though I couldn’t trust anyone, I never knew when I was going to be forced off of Home & Hospital and back into a painful school environment. I had no idea when another desentization, or behavioral therapy plan was going to be implemented and increase my pain levels. In the beginning of sixth grade, although I was still on Home & Hospital instruction, it was in a school building. We had to cut back on my Home & Hospital hours, because I would come home in a lot of pain everytime I went into the school building. I knew, though, that there was no other location that the school system was going to gradually increase the amount of time that I had to go into that building, ultimately increasing my pain levels. The combination of this realization and knowing that another desization plan through medical and mental health providers was inhabitable, I tried to kill myself. I ended up at a psychiatric hospital, and non of the doctors believed me about my Hyperacusis. They did not Believe that I got physical pain from Sound, and they thought that it was purely a behavioral problem and that I was just being manipulative. They didn’t make any noise accommodations for me during my stay, and I was forced to participate in activities all day with kids who were constantly screaming and banging. I was also exposed to loud music, movies, guitars, vacuum cleaners and much more, despite altering staff that I was in extreme pain. The two weeks there was the most painful experience of my life so far, my head felt like someone had broken the bones in my skull and my ears felt like they were on fire. I was not allowed to even go in my bedroom to lay down during the day, barely got any sleep at night due to the noise and pain, and had to where hearing protection 24/7 because I didn’t have a quiet place to go. ( The extreme pain only made me feel more suicidal.) The doctors tried to convince my parents that I was not in any physical pain and it was just a behavioral problem. I was discharged with a behavioral plan which involved taking me off of Home & Hospital instruction and attending school, being near the refrigerator at home, and not being able to spend as much time in my soundproof room or closet.
This plan lasted for 7 seven months and even after I was finally able to convince my doctors and parents to stop the plan, the part about attending school and not being on Home & Hospital instruction still remained. In addition most of the adults in my life including my doctors, school staff, and family still beileved what the psychiatric hospital had told them: that I did not get pain from sounds, and that it was a behavioral problem. Unfortunately I still continue to attend school for me attending school not only caused me pain while I was at school but also lingering pain on the weekends and days off. I often miss at least one day of school every week due to the pain from sounds. My migraines were awful and the Hyperacusis was not improving at all. I still wanted to kill myself because I was in so much pain and I didn’t know if it would ever end. My mother decided to take away my headphones and start forcing me to take showers that summer. The sound of the shower water running sent throbbing pain through my forehead on the side of my head. The sound of the water hitting the bathtub sent sharp pain into my temples and ears. I cried every time I had to take a shower because it was so painful and the pain lasted long after the shower was finished so even though I showered only every other day I was still in heightened and elevated pain in between. Without my headphones to cover my whole ears I only have my earplugs. This further elevated my pain level and I continue to make frequent suicide attempts. I was never able to escape from the pain. Finally my mother stop forcing me to take showers and my father was willing to run my bathwater. I was still in extreme pain though from attending school and not having my headphones at home although thankfully mother would allow me to wear them at school. I spent all of middle school wanting nothing more than to die just somehow escaped from this pain, I just wanted the pain to go away and no one understood. I made another major suicide attempt in eighth grade because I just wanted to escape from the pain. I ended up in the emergency room although I was able to convince the psychologist on duty to let me go home. Things did begin to improve slightly after this my doctors and parents agreed to look at some of the more recent research on hyperacusis.
Fast forward three years to today. I am able to do virtual school, I have a new medical team who believes me about getting physical pain from sounds, my family and teachers believe me, I finally am able to stay quiet environment, have the accommodations to minimize my pain, and am now trying to do everything I can to help others with hyperacusis. I could never have imagined 3-5 years ago that I would be in a position to be able to write this blog post. I don’t know what situation you are in, or how long you have been in it, and I won’t try to pretend as though I fully understand your suffering. I will simply offer several things that I have learned from my own experiences, that will hopefully be able to help you. As I mentioned in the beginning of this post, I think that often the hopelessness that people with severe hyperacusis with pain feel is because they cannot see their situation ever getting better. They can’t can’t imagine people ever believing and accommodating them, and there pain levels decreasing. Although I can not make a 100% promise that things will definitely get better, I can however say that it is highly likely! Hyperacusis Research is currently doing a lot of research on hyperacusis with pain and the mechanisms behind it, as well as why destination is ineffective. There are also people, such as myself, that are trying to advocate for changing within the treatment of people with hyperacusis, as well as create empathy and understanding in the world about the physical painfulness of having hyperacusis. Yes, unfortunately all of this work is very slow. To quote Dr. Herbert Silverstein “the medical community takes a long time to change.” The same is true for legislative policies, and other large systems, however the power of the internet has made it much faster and easier to spread information. With this being said the more people who refuse to accept the way they are treated by the medical professionals, keep insisting that they are in pain, refuse to do treatments that make things worse, the sooner things will start to improve in the way patients are treated. The same is true for getting the level of noise accommodations and modifications that we need and developing empathy and understanding in society, if we make it clear that we will not accept being forced to have to endure severe pain constantly, and every time someone makes an incentive comment we stand up for ourselves, society will be forced to change more quickly. I know that while you are reading this blog post, it may seem like you will never get any relief, know that there are people working on your behalf. Know that you can create hope for yourself, by fighting against your circumstances and truly believing that things will one day eventually improve for yourself and others with hyperacusis!
Hyperacusis Awareness: Sound Sensitivity Treatment 