The Importance of Connecting With Other People With Hyperacusis

One of the challenging things about having hyperacusis is the fact that it is so rare and hard to find other people like yourself. Up until I was almost 14, I didn’t really have very many friends or mentors that had severe hyperacusis, that I could relate with and talk to. I didn’t even know anyone who had anytime of chronic pain and environmental illness until I was 9. I had a vision teacher who had chronic pain made worse by smells, and she has become like a fairy Godmother to me. When I was 12 I also got to meet a young woman in Delaware who had never been formally diagnosed with hyperacusis, but experienced physical from noise. Apart from these two people I felt like an alien because I was always the only one with hyperacusis. I had to learn and figure out how to do research, do things quietly, advocate with doctors, and much more mostly on my own. I have seen through my experience as a blind person and being a part of the National Federation of the Blind, how important it is to have friends, mentors, and a community with your same condition. I remember wishing that I had the same thing for my hyperacusis.

When I joined Hyperacusis Research and Support group on Facebook in the Eighth grade, for the first time I felt like I had a community of other people with hyperacusis who could understand and relate to my experiences. Although I have been fortunate enough to have loving and caring friends and family in my life who tried to understand, they could not relate to being in constant pain from everyday noises, not being believed by doctors, and they daily struggle to avoid noise. There are many things that only people living with hyperacusis or at least some sort of rare, painful, environmental illness can relate to. Connecting with other people with hyperacusis can help those who are struggling, kids, or new to hyperacusis to get ideas, guidance, information, and resources from those who have had to deal with similar problems. 

One of the reasons I started the Hyperacusis Awareness movement is so that I could help connect and reach out to those with hyperacusis to provide information, support, ideas and guidance for navigating life with hyperacusis. I created the Patient Education and support program which matches up those who are new to or struggling living with hyperacusis, with more experiences hyperacusis suffers, including myself, to get empathy and advice. I have also started a secret group on facebook for teens with hyperacusis to be able to make friends with their same condition. My long term goal is to eventually establish a hyperacusis resources and support center. This center would have people who could help connect people with and guide them through the process of getting noise related home modifications, disability, and at home services. It would help patients connect with researchers and find doctors who are up to date on the latest science on pain hyperacusis. The center would have some soundproof apartments that people could stay in temporarily, a special hyperacusis school program and college program.