Patient Education and Support Program

As some of you may know, I am visually impaired. With my visual impairment I had adults in the visually impaired community who advocated for the things that I needed, I always had a teacher of the visually impaired and the assistive technology that I needed. My visual impairment was never treated as a psychological condition, and since it is a common disability that is well understood, people knew how to help me. I remember so many times as a child wishing that there was someone who could help explain to my doctors, special educational team, and even family members that desensitization was harming me. Wanting a person to help me understand what was happening with my own body, other than being told that it was anxiety. While there were other visually impaired people I could ask questions about what to do regarding the different challenges that came with being low vision, there was no one I could turn to for help about the much more disabling challenges that come with living with hyperacusis. Hyperacusis is so rare, and all the adults around me had to go on was the inaccurate information from the doctors. It felt like I was an alien dropped on a forgien and uninhabitable planet by myself, and all the natives were attacking me. 

My experience of having almost no one who: had accurate information about hyperacusis, could help advocate for me, help me problem solve ways to avoid noise, basically having another person with hyperacusis in my life to help me, is an unfortunate reality for many people with hyperacusis. Approximately only 1 in every 50,000 people are diagnosed with hyperacusis, and having a very severe case of it is even more rare. Those with severe hyperacusis often go to doctor after doctor hoping for a cure, and instead get repeatedly harmed by medical professionals’ lack of knowledge about physical pain and setbacks. Since hyperacusis is not a recognized disability those who have it rarely receive the accommodations and support that they need from those around them. Not knowing anyone else who has hyperacusis, not only makes people often feel lonely, but also means that they have no one to be able to: ask questions, get ideas, and help them solve the struggles that come from living with this disabling condition. The only ideas people with hyperacusis often receive come from people who have no idea of the severe physical pain, and are approaching things in a way to encourage the person to gradually expose themselves to sounds. This leads a lot of people with hyperacusis to have to try to figure everything out on their own and fight by themselves against a world that doesn’t understand them.

Things shouldn’t have to be this way, me and others with hyperacusis should be able to have someone in our lives that can help advocate for us, teach us what is know about our condition, and help us problem solve ways to avoid noise. Being a member of the National Federation for the Blind and involved in their various formal and informal mentoring programs has given me the idea to start something similar for people with hyperacusis. The goal of having a the Patient Education and Support program would be to connects those who are new to living with Hyperacusis, have had it for three years or less, or in a position were they are really bad circumstances regarding Hyperacusis, with a person who has been living with pain hyperacusis for 3+ years. These experiences hyperacusis sufferers, that the person is paired with, would need to be well educated in the current research, available resources, noise reduction strategies, and able to help advocate on their behalf (with doctors, employers, educational institutions, family, etc) when needed.