I am 18 and just graduated from high school. I have had both loudness and pain hyperacusis for 11 years. I was born with cataracts and sensory processing disorder. When I was 7, I began to develop chronic migraines. Over time, everyday noises began to trigger severe headaches.
I live with my mom and my grandma. The neighborhood is mostly quiet, except when people mow their lawns. The house has a basement closet, which is where I spend most of my time.
I can’t handle the sounds of cooking, so I stay far from the kitchen when my mom and grandma prepare my meals.
In the kitchen, the refrigerator roars like a truck. I can’t use the microwave by myself. There is no way to stop the clicky latch on the door, the hum as the food heats, and the beeps that never stop haunting me.
I have spent years trying to explain my hyperacusis to people, but they will never understand. My family tries, but it’s hard for them to be as noiseless as I need.
One big challenge is that my grandma has hearing loss, so she blasts the TV. My mom and I are always reminding her to turn it down. She has her phone on max, and puts it on speaker when she is talking with someone. So I need to stay far away when she talks on the phone.
When power or landscaping tools are extremely loud or close, my mom drives me away, sometimes to my aunt’s house or the quiet study room in the library. Still, closing the car door is like a punch to the forehead. If work is being done on our house, my grandma typically stays with the workers and alerts me and my mom when they have left.
To protect myself, I have different types of hearing protection for different situations. I have Sony active noise-canceling headphones, which are great for blocking out low frequencies, and I have Howard Leight earplugs on a chain around my neck.
My bedroom walls and doors have been soundproofed. My mom paid the company of a family friend to open up all four walls, put insulation inside and then rebuild the walls. Acoustic foam has been attached to one side of the door. The floor is covered with thick mats and carpeting on top.
But the windows still let in too much noise for me to sleep. My mom plans on doing additional treatment to the windows. Until then, I sleep in my closet.
Even though I received special education services, the school system didn’t understand my condition. I was placed in a program with kids who screamed and banged. I was put in a room next to the drum room.
One program that worked well for me was called Home & Hospital Instruction. I met with a teacher in an empty hallway in a quiet building. Unfortunately, the doctors and the school system didn’t understand my condition, and didn’t try to. They believed I was too isolated and needed to be gradually exposed to noise. It’s common for people in authority to believe this, even though it’s wrong.
I was then placed in a small program called Bridges. The classes had no more than six kids. I didn’t eat in the cafeteria. I arrived late and left early, and had several other accommodations, but it was still way too loud. I came home in extreme pain every day and wasn’t able to do much besides lie down in the closet.
Virtual school during the pandemic helped a lot. I was able to control the volume and disconnect the sound when necessary. I could remain in a mostly quiet environment.
I am passionate about advocating for people with hyperacusis, rare conditions and chronic illnesses. My goal is to get an amendment to the ADA so that workplaces, schools, and public places would either have to modify the environment to meet their needs, provide virtual options or provide a separate environment altogether.
I am enslaved by sound. In this world, people with my nasty disability do not have the right to go about living their lives without pain. I cannot make a move without considering the noise it might make and the accompanying increase in pain.
Thank you so much fhr speaking up about your condition! I agree most public places have horrible sound acoustics. My daughter has some issues as well- and has some of your similarities. I’ll tell you something- the ADA should be helping already because buildings are hard for hearing impaired too- bad acoustics further disable hearing impaired due to sound distortions.
I am 63. My issues are very similar issues to yours. I have had chronic migraines and almost every day headaches for 35 years. But, in the last six years it is so much worse. Everyday quiet noises like opening and closing a microwave, running water in the sink, putting away dishes from the dish washer…etc…is painful… most noise is painful except for very quiet specific music.. The pain isn’t in my ears, the pain felt as a headache or migraine.
I am glad that you are advocating for special needs in the way that you are. I can’t imagine having to go to school with screaming kids.
I never knew that there was a word for our condition… hyperacusis … until about five months ago. I have been reading quite a bit about this… but, I haven’t found anyone with similar symptoms to myself.
I met with a hyperacusis specialist today. She said that I am an outlier. That I belong to a small tribe of people with similar issues. I wish you the very best. This is a very difficult thing to deal with and you are dealing with it at such a young age. I am so impressed with your ability to communicate and your desire to help people.