advocacy
h e ar i n g h ealth foundation
Advocating for Relief A high school student with hyperacusis is raising awareness of the sound sensitivity condition. By Jemma-Tiffany Rosewater When I was 8 years old, an audiologist declared that I have hyperacusis, a rare hearing condition that makes everyday noise unbearable. It has no cure. Now years later, loudness is still completely intolerable for me, but I am committed to improving the lives of everyone in my situation through online education and advocacy. My hyperacusis symptoms first became noticeable at age 6, prior to the official diagnosis, when I began to feel pain from loud noises like in the school cafeteria and at weddings and parties. I was generally okay as long as I wore earplugs. At 7, I began experiencing migraines that lasted for up to months at a time and were exacerbated by normal everyday sounds. Unable to go to school, I started home and hospital instruction. I stopped going to stores, restaurants, and parties and became unable to watch TV at a normal volume because I experienced so much physical pain to my head and ears. As the pain worsened, I stopped being able to tolerate the sound of wind blowing or birds chirping. I stopped going outside. My mother took me to a lot of different doctors who concluded I had chronic migraines with extreme sound sensitivity. Almost all dismissed the idea that I was experiencing physical pain from loud sounds and instead believed it was psychosomatic or an emotional disorder. The few doctors who did believe that I experienced physical pain, including my audiologist, forced me to partake in desensitization and sound exposure therapy. This required me to gradually turn up the volume on my electronic devices, participate in everyday activities like school and family dinners, and reduce my use of hearing protection. These treatments only increased my pain level and, in turn, made me even more sensitive to sound. I felt so misunderstood and invalidated. My hyperacusis diagnosis added to the ways I was already differently abled than my peers. I have also had low vision/legal blindness since I was a baby, seizures, sensory processing disorder, and chronic migraines triggered by my hyperacusis. I read Braille and use visual magnification devices such as a closed-circuit television and an audiobook player. Because of my sensory processing disorder, which has been present since I was a baby, I am unable to tolerate the feeling of most clothing. I can only wear extremely soft clothing and slip-on, Crocs-like shoes.
Eventually things did begin to improve slightly after I showed my doctors the more recent research on hyperacusis. We tried therapies not involving sound, because that had caused me more pain, and now I am able to sit in my bedroom without hearing protection, a big improvement for me. 20
hearing health
hhf.org
