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!

It often takes patients who have rare conditions several years to get a diagnosis, that is the ones get diagnosed. Unfortunately there are many people who never receive the correct diagnosis, and are either misdiagnosed or undiagnosed. Those who expeeince physical pain from everyday sounds, are no better off. Throughout my advocacy I have met many people, who told me that they just recently got diagnosed with hyperacusis, despite having symptoms for many years or in some cases their whole lives. I have also talked with people who despite experiencing physical pain from everyday sounds, have never even heard of hyperacusis from their medical providers. 

Most doctors, even most audiologists have not even heard of hyperacusis, which means that when they see patients who report pain from everyday sounds, they either don’t know what to diagnose them with or, more often diagnose it as a mental health condition. Children are even more vulnerable to being misdiagnosed as having an emotional disturbance or behavioral problems, because they either have difficulty explaining their symptoms, or are believed to be misusing words when they report physical pain from sounds. Even though getting a diagnosis currently unfortunatly offers patients little protection from harmful sound exposure treatments, at least if it is in the medical record they will be eligible to receive different types of disability services, accommodations, and supports. In the future, as more research comes out, diagnosed patients have a much better chance of being recognized by the medical community having their pain being a result of actual pathological causes. 

In addition to the fact most doctors having never even heard of hyperacusis, those with extremely severe hyperacusis with pain, who don’t have a friend or family member to help them, in some cases aren’t even able to go to see a doctor. This is because doctors offices are loud and often not accommodating to those with hyperacusis symtoms. There are people talking and laughing, TV or music in the waiting room, fax machines, printers, carts rolling, etc. This is not even mentioning the noise in traveling to the appointment. Even calling to schedule the appointment can be a painfully impossible task for someone with extreme hyperacusis. For those who are able to get in to see a doctor, many of them experience severe pain or setbacks and worsening of there hyperacusis as a result of the noise.

In order for more patients to be properly diagnosed two things need to happen. One there needs to be a great increase in public awareness among all medical professionals about hyperacusis. This is where patient advocacy is so important; I am currently working to try to get a proclamation to declare May 3-10th as hyperacusis awareness week. The more doctors who are aware of hyperacusis, the less likely paitents are to be misdiagnosed. The second thing that needs to happen is that medical facilities need to be more accommodating and accessible for people with hyperacusis. This is where adding a Title Six: Teleprescence and High level Sensory modifactions to the ADA is so important. With this amendment, medical facilities would be required to have an option to schedule appointments online or through email, have telehealth appointments its closed captioning and dial-in audio options, have the doctors conduct at home visits, and other accomodations that would make it possible for people with hyperacusis to access care.

As people with hyperacusis we watch as the people around us are able to do things that we can’t do. From going to stores, restaurants, listening to music, going to movies, or for some of us even doing basic things around our house such as using appliances that make noise. Our hyperacusis limits us in so many ways, and it can be so frustrating and make us feel like “I don’t have a life.” The misconceptions of medical professionals and society that view hyperacusis as more of a psychological condition and think that we just need to gradually adjust to noise, and after hearing things like this over and over we sometimes start to feel like we are doing something wrong, and “should be able to do things that we can’t.” Unfortunately, sometimes, even within the hyperacusis community we even compare ourselves to each other in support groups or forms. When we see posts about other people with hyperacusis being able to do things that we can’t do, it can make us feel bad about ourselves. Sometimes, doctors and those around us will even purposefully talk about things that others with hyperacusis are able to do and make it sound like we should be able to do those things too. 

First I want to say to anyone who is a medical professional, friend, family member, caregiver, or know someone with hyperacusis please DO NOT MAKE THEM FEEL BAD ABOUT THE THINGS THEY CAN’T DO AND DON’T COMPARE THEM TO OTHERS. For those with hyperacusis we need to remember when we watch and hear about all of the things that “normal” people are able to do, that they don’t get physical pain from everyday sounds. They are not inside our bodies, their lives are completely different. They don’t go through what you go through, and it isn’t fair to yourself to them isn’t being fair to yourself. Don’t compare yourself to others with hyperacusis either: hyperacusis ranges from mild to severe and sounds that are painful for some people are not painful for others, our bodies respond differently to the same treatments and therapies, and our pain thresholds are different. Don’t get me wrong, the support community, and being able to connect with others with hyperacusis is very important and helpful, but we need to remember that each of our experiences and limitations are unique. Whether it be “normal people” or other hyperacusis sufferers, when we think about the things that they can do that we can’t it can make us feel like “we are less than them.” Frequent comparison can eventually lead to lowering our self esteem, and even turn into a cycle in which we are constantly criticizing and looking down on ourselves. All we see, think about, and focus on are all of the things in our lives that we “can’t and aren’t able to do.” Over time this type of thinking can result in depression. I have lived with hyperacusis for about a decade now, and I still struggle at times with comparing myself to what other people are able to do and the frustration of wishing that I could do those things. Although over the years, I have learned several things that have helped me greatly decrease the amount that I compare myself to others. I wanted to share the things that I have found have helped me embrace my own limitations, and hopefully you will find some of these things helpful as well in your journey of self acceptance.

Instead of looking at all of the things that you can’t do, try to focus on the things that you are able to do. Even if this is a very short list, if you think about it for long enough you will find that there are some things that you are able to do. Try building your skills in these areas, increasing the amount of time you spend doing the quiet things you enjoy, and find creative ways to use the things you CAN do to help others. Doing this will make you feel like you actually have a life that has purpose and meaning, and you will begin to think less about all the things that other people are doing. It is inevitable that you will see, hear about, or maybe even get offers to do and participate in things that you aren’t able to do. When this happens, it’s natural to feel sad and frustrated. One thing that I have found helpful in these situations is to find another activity or thing that you enjoy, even if it is something that you do in a soundproof room by yourself, that you can be doing while others are doing whatever fun thing that you can’t do. Surrounding yourself with people who understand your limitations, and build you up instead of making you feel bad about the things that you can’t do is also important. If your family and friends are not understanding and making you feel bad about your limitations, try to find a support online hyperacusis community with people who will help you feel confident in yourself, and show you how to accept and embrace your limitations.  

As a sixteen year old Junior in high school, whose hyperacusis is so severe that I spend the majority of my days in soundproof bedrooms, closets, and underground basements, my mom and I were naturally worried about my future. Questions like: what types of jobs could I have if almost everything is too loud for me, how will I get a higher education, how will I have warm food, clean clothing, bath, and so muchK more? Hyperacusis is such a rare condition that there aren’t really any guides, or people who specialize in transition planning for those with hyperacusis. Just as I have learned from my childhood and teen years, me and others teens with hyperacusis are going to have to be pioneers in planning for our future. Thankfully, I have been fortunate to have familia, friends, educators, others with hyperacusis, and the power of the internet to help me try to figure out how I can make my adult life work for me, despite my severe noise limitations and pain. Every teen or young adult with hyperacusis has their own unique circumstances: severity of hyperacusis, where they live, family support or lack thereof, talents and goals, etc. The tips that I wanted to share in this post are meant to provide a general framework that will hopefully help you plan around your own individual needs, goals, limitations, and circumstances.

Know Your Needs and Limitations

I have mentioned about this in many other posts in various ways, but it is so important. Know what sounds cause you pain, both directly and the effects of this on your daily life. An example of this would be, if multiple people talking and laughing causes you pain, and you’re not able to go to out to the store as a result. know what activities/places/things you are unable to do or participate in. You might find it helpful to make a list of all of the sounds that you can think of that are painful for you, and write beside them the affects this has on your ability to live a “normal” life. Don’t feel bad or scared if your list of sounds that are painful and things you aren’t able to do is long, we will discuss how to plan around these things later. Make sure that when you are planning your career, living arrangements, and other parts of your future all of your plans are within your noise limitations and will not cause you pain.

Know your talents, interests, and skills

Now that you know the noise limitations you have to plan within, it’s time to figure out what your dreams are in life. What do you want your life to look like? How can you contribute to the world within your limitations? What types of things do you enjoy doing, and what are you good at? These are all questions that you can ask yourself when trying to plan your adult life. A great place to start is by making a list of the things that you enjoy doing. From that list make a shorter list of things you either have a talent for, or would be able and willing to work hard to build your skills in. Now, keeping your noise limitations in mind, start to think about what types of ways you could make money from the things on your list. Don’t only think about common jobs, think outside of the box and also consider work from home and self employment. People can make money doing almost anything nowadays, especially with the power of the internet. Speaking of the internet, it is a great tool to use to research creative jobs ideas and ways that other people have been able to make money off of your interests and skills. Social media is another great way of connecting with people who have similar interests and talents, who may have found ways to make an income or find jobs based on these things. Next you would need to decide if you want to get higher education or some type of other training to help you build upon and improve your skills and talents in order to make them marketable qualities. If you decide to get some type of higher education or training make sure that you do research to find a program that is within your noise limitations and can meet any other special needs you may have; make sure to consider online programs as well.

Finding Resources to Help Meet Your Noise Limitations

If you remember I mentioned earlier I had suggested adding onto your list of sounds that are painful for you, how it impacts your life on a daily basis. The reason that knowing the practical impact of your hyperacusis is so important is so that you can begin to figure out what type of living and environmental modifications and supports you will need as an adult. For example if the sound of: heating and air conditioning, natural outside noises, neighbors, and vehicles are painful for you; you will likely want to live in the suburbs or country and soundproof at least one room in your house. You may also want to make sure that where you live has a quiet, modern heating and cooling system. Depending on where in the world you are; I suggest trying to make sure that where you live has ventless closets and/or underground basements that you can go. It may be that if you already have an environment that meets your quiet needs, and your family is understanding, that you live with them. The second main area to think about the practical impact of your noise limitations is in your ability to do and participate and basic life tasks and activities. This includes things like: going to the store, cooking food, using a microwave, washing machine, driving, running tub or shower water, etc. If you are not able to do these things as a result of your noise limitations then it is important to start researching services, supports, and agencies in your area that would be able to provide you with someone to assist you with these tasks, if your family is not able or willing to do so. Beginning planning for your future and understanding your needs, goals, finding and researching resources and options that can help you meet your noise limitations and accomplish your goals; early is ultimate going to pay off long term.

    “Many people, ranging in severity of hyperacusis symptoms, would say online school is the best, but I’m on the fence. I have milder hyperacusis symptoms, making it easier for me to be in a school setting without needing hearing protection. With my hyperacusis, it’s hard to focus when I’m physically in my small school. It gets loud during lunch since there is not a secluded, quiet space for me to sit at. That, and listening to videos, some staplers, and the art and music rooms are the spaces and sounds I have to be careful around and hope that I don’t experience a setback, a decrease in sound tolerance.
I don’t get many setbacks. If I do, they don’t cause that much pain and if I’m careful they only last for a day or two. I’ve only had major episodes/setbacks twice when I was at school in-person. One was caused by a loud stapler being used over and over again during a math test. The other event was when a ruler hit the hard-surfaced floor at the end of class and teenagers were honking their horns in the parking lot with heavy traffic (the flow in that parking lot is terrible). Both events happened before I even heard the word hyperacusis. I had no idea why these sounds were hurting me until about a week later when I was diagnosed. 

    Two and half years later, I still remember the sound of the ruler hitting the floor and it causes me to wince everytime.
The biggest issue I faced at school was focusing when other students were whispering while the teacher or other students were talking. Even the small noises in a silent room caused my ears to perceive the small noises louder than what they actually are. Then there weren’t enough sounds to drown out those noises. 
Online school with google meets is great. I do miss talking to my teachers, especially since it’s my last year at the school, but I can better control my environment at home. The downside to being at home all the time is that my tolerance to certain sounds has decreased. I am getting used to videos a bit more, but some audio still creates a very sharp pain. For some other students, I have to turn my sound off completely because it’s either very hard to distinguish what they’re saying, they have a terrible microphone in general, and/or when they speak, their consonants are enhanced/louder than speaking in person. The best way for me to soak in information is to listen (on a very low volume of course) and read closed captions.
I am thrilled that Google Meets has closed captions. Usually, the text comes a second or two after someone says something and is accurate for the most part. It will make small mistakes, but you can tell what someone is saying. 

    However, there are times when I am fully dependent on closed captions and it doesn’t work. The class I have to have my volume off is my math class, which happens about one to two times out of five class periods. During those times, there have been some periods where I am then completely dependent on the notes written or are already given to us. This makes it difficult to completely understand how to do a math problem.
Everytime I first log onto a meet, the volume will either be off or at the lowest setting, which is usually a step of two below a volume I usually sit at, and I turn on closed captions. Last Friday, December 11, my computer wasn’t working properly and I couldn’t log onto a meeting. With only a minute remaining until class started, I rushed to log on on my phone and put one earbud into my left ear. I have used my phone before and it worked out fine with headphones and was at an appropriate volume. As I was waiting for Google Meets to open on my phone, I turned my phone volume to the lowest setting. I hit the join button and started putting my right earbud in when my left ear exploded into pain. I immediately grabbed my left earbud and took it out. I was silently crying and screaming on the inside as I tried to lower the volume. 

    Never before had I experienced this loud of a volume with my earbuds. Nothing was working to turn down the volume. Then the pain really set in.
The only control I had over my reaction was to make the crying and the gasping silent; a skill I learned how to master from hyperacusis. I was able to text my mom to come into my bedroom silently with shaky hands. Through the shock and heartache my mom experienced from seeing the state I was in, she was able to remain silent once she knew the pain I was in was caused by hyperacusis. I whispered what happened, doing my best to eliminant consonants, so it wouldn’t cause me more pain; another skill I learned how to do based off of my hyperacusis. I wasn’t able to attend the rest of the class that had about an hour remaining and luckily I only had one more class after that, my math class.
I went into my math class meeting with no volume with headphones on just for my own surroundings at home and tried my best to understand what was going on. After class, I stayed to ask two small questions. However, I couldn’t even listen to the sound of my voice and had to type the questions into a chat. My teacher was very patient as they waited for me to type. Thankfully, I go to a small school where teachers can be more accommodating and sympathetic towards their students both in the online and in-person setting.
The next day, on Saturday, though I was feeling better, I was very cautious. I didn’t listen to any videos/music or do anything at home without hearing protection, even from the things that don’t make much noise. I couldn’t even do my math homework without headphones on because the textbook pages and the paper were somewhat painful.
 As of December 15, my hearing is back to normal, although there still is a slight decrease in tolerance.

To answer my initial question “Is online or in-person school better for my hyperacusis,” there are cons and pros to each. However, I think the key factor for answering this question is the size of the school/class. If there are less students, maintaining a decent tolerance to sound is easier and less problematic. There will always be incidences where I experience a setback, both online and in-person. It’s inevitable because we all make mistakes.

The next school year I will be starting college. I have an option of physically going to a college and a chance to take the degree I want to pursue online. In the future, I will be meeting with colleges online to discuss my hyperacusis to examine all my options and decide which one will be best

“Hello blog readers 🙂

My name is Helen, I’m British, and I’ve had Hyperacusis for over 2 decades now as a result of a “minor” head injury, which meant I had to drop out of school before getting my A levels. No, that doesn’t seem very minor to me either!

A month or so ago Jemma-Tiffany put out the word that she would be grateful if other people would write a guest blog and I though, maybe I could… but I’ve no idea what to write about- my life’s far too boringly repetitive.

But this festive season brought with it a touch of inspiration, so here are my thoughts on:

Why having Hyperacusis is similar to the first Christmas in Bethlehem over 2000 years ago. Sounds daft, right? But bear with me, it kind of works!

Also I hope everyone will see my point whether you are person of any faith, or none.

First and most importantly- nobody chooses Hyperacusis. Mary didn’t volunteer to bear Jesus but when the Angel Gabriel announced to Mary that she was pregnant, she went along with it, she changed her life to deal with this revelation, and she just got on with it. It’s takes many different time scales for people with Hyperacusis to accept their diagnosis is a part of their life but as there is no proven cure for all people with Hyperacusis, we just have to make the best of the situation that we can.

Having someone who believes you and you can rely on makes all the difference in the world. Despite Mary being pregnant with a son that wasn’t his Joseph believed it was God’s son, stood by her and looked after her. when one has Hyperacusis being believed is a massive weight lifted of your shoulders. A medical professional taking your word about the pain we are each in and, even better, can give us a name for our symptoms, allows us to tell other people about it in a confident manner, which then allows them to know how to support us- but it always helps to tell them exactly what we need, people do get things wrong!

Sometimes we need a friendly person to say “Do not be afraid”- this is said by the Angels to Mary, Joseph and to the shepherds; we too sometimes need someone to say “do not be afraid of your Hyperacusis, it’s not out to hurt you, it is simply reacting to the volume of the world”.

Mary and Joseph had to travel to Bethlehem to be taxed.. now I can’t think of a direct link but Hyperacusis is certainly taxing, physically and emotionally.

Their 90 mile journey must have been exhausting, especially whilst Mary was almost ready to give birth; so too our journey with Hyperacusis is never smooth, there will be sounds we cannot control that hurt massively, but normally, given enough time, we can return from these experiences back to whatever passes for our own “normal” with Hyperacusis.

There was no room to stay at the inn so they ended up in an uncomfortable place- this is all too familiar to people with Hyperacusis, visiting places we don’t know has many pitfalls which can make life more painful. Perhaps the bathroom has a noisy extractor fan, the hotel didn’t mention they were building an apartment block next door, and the fire alarm test they didn’t think to tell us about goes off when you don’t have hearing protection on. Another common experience the only area which is quiet might be the bathroom, or the bedroom with the children’s bed in, I’m sure many people with Hyperacusis have been forced to consider these even if they didn’t actually sleep there!

Visitors bring their own problems! The wise men had told the King, Herod, of Jesus’s birth, which created ire in the King and caused dangers for Jesus, Mary and Joseph. Visitors often do so in our lives too, you’d think that being at home would mean it was quiet and safe for our ears, but no, visitors bring sound with them, voices that aren’t always as quiet as they could be, the kids that love to run around squealing, the cutlery and crockery at dinner- Ouch! It’s not always easy to negotiate behaviour that doesn’t hurt us but there’s always one last option…

If it gets dangerous- RUN AWAY! Mary, Joseph and Jesus fled to evade the bloodlust of King Herod, we, as people with Hyperacusis, have to give ourselves permission to leave a situation if that is the most suitable option. it’s not admitting defeat, it is protecting ourselves.

So, what do you think, do we have anything in common with a stable in the little town of Bethlehem all those years ago?

I’m wishing you a merry and peaceful Christmas (and Hanukkah, and anything else being celebrated at the moment) and New Year.”

Helen

It’s December and the middle of the Holiday Season. When there is not a global pandemic that usually means lots of parties, family gatherings, gift giving, music, and decorations. Although most people enjoy these activities, depending on the severity of a person’s hyperacusis, most if not all of the things listed are painful. Think about how much of what we do around the Holidays involves noise: parties are groups of people gathered together which inevitably involves multiple people talking and laughing and usually some type of audio media. The same is true for family gatherings. Often time gifts and presents are wrapped in wrapping paper, which makes loud crinkly noises which causes me sharp stabbing pain. Music has a lot of ups and downs in volume, frequency and pitch, and is physically painful for me even on a low volume. Lastly setting up and unpacking decorations can often involve accidental banging of boxes and items, which causes throbbing pain for me.

This year many people are having to celebrate the holiday season differently due to COVID-19. There are a lot less parties and gatherings, and the ones that are happening are mostly being done through distance communication platforms. Although the virtual world has enabled me to be able to participate in many activities that were previously too loud, by allowing me the ability to mute the audio, I am still unable to attend parties or social gatherings. This is because during such events there are always multiple people talking and laughing loudly at the same time, during most of the meet, which means that I have to have my audio muted the entire time. Even though most in person events are being cancelled, there still remains many other noise problems during the holiday season related to music, gifts, and decorations. That is why it is important for people with hyperacusis to know their noise limitations, and be able to avoid noise levels that are painful to them.

Unfortunately people who don’t have hyperacusis, and don’t have to experience the impact of the noise, will often encourage and pressure those with hyperacusis to participate in or do activities that are too loud for them. There is so much out of date misleading information from medical professionals and the internet promoting that gradual sound exposure is “good and will help improve hyperacusis” that many well meaning friends and family truly believe that by having their loved one partipat in that are “painful” that are actually helping them. As someone who has grown up with severe hyperacusis, I know personally how hard it can be to stand firm and tell people that you can’t do something because it is painful for you, when they are pressuring you. Ultimately though, the people who make these requests and well meaning encouragement, are not the ones who will have to deal with the intense physical pain and setbacks from the noise, only you are. No matter how low your sound tolerance is and how disabling it is, never let other people’s thoughts and misunderstanding about your lack of participation and inability to do “normal” things make you feel bad about yourself or that you have to “prove” something to people.

In addition respecting your noise limitations and not exposing yourself to painful sounds, within your control here are several other tips that I have found helpful in having a good holiday season with hyperacusis, I hope that you find some of these things helpful as well. First, come up with your own quiet holiday traditions, even if you are doing them by yourself. During the holidays, I know that I get to look forward to eating lots of delicious desserts that my mom and grandma bring back from parties and family gatherings. As I am not able to really enjoy Christmas music, my mom and I drive through a silent light show hosted every year in our county.

Secondly, as your family and friends, and those giving you gifts to please not use wrapping paper. When you are preparing gifts for other people, you can put them in cloth or canvas bags, don’t worry try to hurt yourself by making the gifts look fancy with wrapping paper. Finally, communicate with other people who have hyperacusis, especially during the holiday season. You will be able to relate with each other, and share tips and strategies for minimizing and avoiding all the noise that comes with the holiday season. What things have you personally found helpful for navigating the holiday season with hyperacusis, feel free to share your experiences in the comments. You never know, you might help someone else reduce their pain levels.

There is no good age for developing hyperacusis with pain, and there are common challenges faced among all people with this condition. The main ones being chronic pain from everyday noises, not being believed about being in physical pain, and not being able to participate in activities or events due to the noise. Children with pain hyperacusis have to deal with all of these things, to the same extent and sometimes even more so than adults, while also having additional struggles with their hyperacusis as a result of their age and development. This post does not claim to give a complete list and description of all of the challenges faced by children with hyperacusis, as each child will have a different life and experience. Rather it covers the broad category of struggles a child with pain hyperacusis is likely to have growing up, based on my own experiences growing up with this condition and my conversations with others who had hyperacusis as children.

Developmental Level
It’s well known that children react to illnesses and pain differently than adults do, because their bodies and brains are not yet fully developed. A child’s reaction to physical pain depends very much on their age, gender, and other cultural and environmental factors. A young child who breaks their arm for example may curl up into a ball, start crying or even throw a tantrum. Just as the reactions to acute pain from a common injury may be different in children, the same is true in terms of their reaction to chronic pain caused from hyperacusis and noise. Depending on the age of the child, 0-5, the child may not even have the language skills to explain that they are in pain. Even older children can tell you that they are in pain, usually aged 7+, often still don’t have the knowledge of being able to articulate in detail about the type of pain sensation and other specifics. The problems for people with pain hyperacusis having there pain understood and believe are: the lack of research on the mechanisms behind noise induced pain leads to the belief that the pain is psychogenic, the lack of awareness of the existence of the condition in the medical community due to its rarity, lack of communication between researchers and clinicians, and the common myth most patient can be cured with desentization. Combine these problems with the children’s reaction to the pain hyperacusis, which may involve anything from: crying, covering there ears, running away, curling up into a ball, tensing their muscles, becoming anxious before noise, doctors and the adults around them frequently wrongly assume they are in emotional distress from noise.

Lack of Control Over There Care Plan
In the United States, and most countries in the world children under the age of majority do not have the ability or right to accept or refuse medical or therapeutic treatments. This responsibility lies with their parents or guardian, which if they have loving ones is “usually” not a major problem. However for children with hyperacusis, or any type of rare under researched, misunderstood, or chronic pain condition this presents a major risk of accidental harm to the child. As mentioned earlier many doctors, due to the lack of communication of research findings between scientists and clinicians, many doctors still treat hyperacusis with gradual sound exposure and behavioral therapy. Whereas an adult has the ability to refuse or reject this treatments, or stop them if they cause great pain and make there condition worse, a child has no choice but to be forcibly subjected to them. Doctors will often assure parents/guardians that the child is not in severe physical pain, and that their condition and pain will improve over time. Well meaning parents/guardians wanting to help their child will often implant these treatments, even if they are told by the child that it is making their pain worse. New research is starting to reveal at least two, possibly three different pathological mechanisms behind pain hyperacusis, as well as the concept of setbacks, temporary or permanent increases in pain levels and sound tolerance after being exposed to noise above their sound threshold. This means that children forced to undergo desentization can and do experience severe lingering pTo learn more about this read the following medical research articles:

https://journals.lww.com/thehearingjournal/Pages/articleviewer.aspx?year=2019&issue=10000&article=00004&type=Fulltext

https://www.entandaudiologynews.com/features/audiology-features/post/unravelling-the-mystery-of-hyperacusis-with-pain

Auditory Nociception and Pain Hyperacusis Symposium

School
Education is a very important part of a child’s development and largely linked to their future success. In the United States and many parts of the developed world education through a certain age is compulsory. Although some of these countries have special education laws, many of them are not set up to provide the needed level of quiet for students with pain hyperacusis. Even in special education programs for students with disabilities the daily noises of: people talking and laughing, bells ringing, noise from other classrooms and the hallways, intercom system, videos, music, and more mean that children with severe pain hyperacusis experience constant physical pain not only while at school but lingering pain and setbacks for up to weeks afterwards. Unfortunately due to the misinformed belief by many physicians that hyperacusis pain is psychogenic and that being in the school environment will help desensitize them, often the school system treats these children as though they have an emotional disturbance rather than a severe medical condition and providing them with 1:1 instruction in a specialized quiet environment. This means that students with pain hyperacusis are either forced to endure intense physical pain and worsening of there hyperacusis in order to get their education, their parents are “forced” to homeschool them, or they end up having to drop out of school.

Throughout human history there have always been people whose medical symptoms could not be understood by the science and medicine of the time. For thousands of years, and even in some countries today such people were often considered to be witches or possessed by demons or evil spirits. Many women who reported symptoms were often considered to be hysterical or psychotic. This meant that these people were often killed, locked up in mental institutions, or subjected to dangerous and harmful treatments for conditions such as epilepsy, migraines, tumors, and other conditions that modern medicine now understands the mechanisms behind. Although for the most part in developed first world countries people who experience symptoms that our current technologies and scientific understanding can not yet detect or explain are not accused of being witches, but instead there symptoms are thought to have a psychogenic Origin.

Several decades ago conditions such as fibromyalgia, chronic fatigue syndrome, semicircular canal dehiscence, were considered to be psychogenic and even listed in the DMZ of mental health conditions. This meant that these patients were treated the same as psychiatric patients who had emotional disorders. Through patient lead advocacy, lead research, and advancements in medicine, technology, and science these conditions are now recognized to have actual physical causes and mechanisms. Throughout my own life time, when I was first diagnosed with hyperacusis in elementary school it was thought to be an emotional disorder that could be “cured” with sound exposure. Now ten years later and new research is coming out to show that there are actual neurological and otological mechanisms responsible for the pain that people with hyperacusis experience from noise including Type II neurons in the cochlear, middle ear muscles, and the trigeminal nerve. Again these new discoveries were thanks to advocacy from the patient lead organization Hyperacusis Research and the exponential rate at which technology and scientific knowledge is increasing. Unfortunately even in our modern world in which information can be spread so quickly, the communication between researchers and clinicians is lacking not only for hyperacusis but other rare, and poorly understood conditions as well. This means that these patients continue to be subjected to harmful and painful treatments that either do nothing or worsen their conditions.

Doctors believing and labeling conditions that our current technologies and sciences are not advanced enough to detect or understand as psychogenic is at its core the same concept as how people labeled people with unexplainable symptoms at the time witches or possessed. The medical world refuses to acknowledge that they don’t yet have the ability to understand the cause of their patients symptoms and not wanting or willing to look like or say they don’t know or understand the pathology behind something. Given the history of so many physical symptoms that were in different ways terms to be generated from the patients mind now understood and recognized as medical conditions, and the fact that scientists and researchers admit that we understand very little about the human brain and structures and activity below the cortical surface, and don’t even have a functional model of the human auditory system, the medicine profession needs to not be so quick to label physical symptoms they don’t understand as psychogenic.