5 minute read
Advocacy Advocating for Relief. Jemma-Tiffany Rosewater
Advocating for Relief
A high school student with hyperacusis is raising awareness of the sound sensitivity condition. By Jemma-Tiffany Rosewater
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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.
Although I am still in high school, I know that I want to dedicate my life to raising awareness and advocating for patients with chronic pain conditions, rare disorders, and hyperacusis. I have already begun educating people about my unique experiences with sound through Hyperacusis Awareness, a support initiative I started that connects the community and educates policy makers and doctors.
In the years that followed, I was in and out of school and suffered tremendous emotional distress as a result of being in pain all the time. I’ve avoided or made drastic adjustments to situations that may seem harmless to people without hyperacusis. For example, I’ve had difficulty eating dinner in the kitchen because the sound of the refrigerator humming can cause throbbing pain on my forehead and the side of my head above my ears.
I have been unable to sleep in my own bedroom because the noise of traffic from the road can bother me too much. I have even slept in my bedroom closet for maximum insulation after my parents soundproofed the walls of the room. My mom drives us away from the house when landscaping work is taking place nearby because the power tools have made me feel like I’m being punched in the forehead and I develop a migraine.
Eventually I decided to take matters into my own hands and conducted my own research on hyperacusis, which I presented to my doctors. Things did begin to improve slightly after they read some of the more recent science about hyperacusis and the use of different therapies that did not involve sound. I started using various electrical nerve stimulation devices on my ears and head: a TENS (transcutaneous electrical nerve stimulation) unit; a Cefaly neurostimulation headband; a PEMF (pulsed electromagnetic field) device; and an Alpha-Stim electrotherapy device. All of these devices deliver low-level electrical stimulation or electromagnetic fields to nerves or the brain. They helped reduce my pain level, so that I am now able to sit in my bedroom without any hearing protection, a big improvement for me.
Although I am still in high school, I know that I want to dedicate my life to raising awareness and advocating for patients with chronic pain conditions, rare disorders, and hyperacusis. I have already begun educating the world about my unique experiences with sound, primarily through a support initiative I started that is called Hyperacusis Awareness. It connects people with the condition and educates policy makers and doctors.
Hyperacusis Awareness has an active website, Facebook page, Instagram account, and YouTube channel, through which I share information and organize virtual meetings. I am especially passionate about being an empathetic voice for children, teenagers, and young adults living with hyperacusis.
In addition to Hyperacusis Awareness, I conduct virtual training for people who interact with someone who has hyperacusis. I am an advocate for Rare Advocates Representing Everyone, a patient advocacy group for people living with chronic, invisible, mental, or rare diseases, and a member of the Every-Life Foundation’s Young Adult Representatives of Rare Disease Legislative Advocates.
I’m working on a novel in which one of the characters suffers from hyperacusis. I also closely follow the work of Hearing Health Foundation’s partner Hyperacusis Research Ltd., and look forward to participating in a clinical trial for hyperacusis once I reach 18.
Jemma-Tiffany Rosewater lives in Maryland. For more about Hyperacusis Awareness, see hyperacusisawareness.wordpress.com.
Share your story: Tell us your hyperacusis journey at editor@hhf.org.
