It is hard to understand hearing loss until you have lived it — the mental fatigue that comes from listening all day, the debilitating impact of background noise, the frustration of non-working accessibility equipment. These are things people with hearing loss face on a daily basis. People with typical hearing — well, they just hear. This is why it is so important for those of us with hearing loss to find a peer group of people like us.
Not only is the camaraderie enjoyable, we can learn a lot from one another and we will feel less alone in our struggles.
Don’t Take Your Hearing Loss Journey Alone
Like most people, I started my hearing loss journey alone. My father had hearing loss, but he never discussed it, instead living his adult life suffering with denial and stigma. He eventually isolated himself from his family and friends, leading a lonely life. When I first noticed my hearing loss in graduate school, I was terrified, assuming I was doomed to a life of solitude as well.
For many years, I followed in my father’s footsteps, hiding my hearing loss from all but my closest friends, but once I had children, this all changed. Since my hearing loss is genetic, I worried that I may have passed it onto them. I didn’t want them to see me feeling embarrassed by my hearing loss or disrupting my life to hide it. I needed to set a better example of how to thrive despite hearing loss.
To educate myself, I began volunteering at a local hearing loss non-profit organization. This helped me to meet other people with hearing loss and discover they were leading vibrant and fulfilling lives. They engaged in meaningful work and had active social calendars. I began to feel less alone and less afraid.
My new hearing loss peers showed me there was nothing shameful about hearing loss. They taught me tips and tricks to lead a better life despite the challenges of hearing loss. They informed me how to seek out caption readers at the movies and on Broadway. They coached me how to advocate for myself with my friends and family and taught me what communication best practices to use so that I could hear my best in a variety of situations. Most importantly, I no longer felt alone with my hearing loss. I was now part of a community of people like me.
How To Find A Hearing Loss Support Group
Many hearing loss support groups exist — both actual and virtual. Hearing Loss Association of America runs the largest group in the United States, operating more than 100 local chapters and holding an annual convention each year. Click here to find a chapter in your area.
Other groups with local chapters include Say What Club, Association of Late Deafened Adults (ALDA) and A.G. Bell, all three of which also hold annual conventions for their membership. A.G. Bell focuses on families of children with hearing loss, while the other groups are primarily for adults with hearing loss.
Many hearing loss groups host monthly meetings with educational speakers on a variety of hearing loss topics. There is usually time for socializing as well. Often, the chapters organize advocacy projects to improve accessibility for people with hearing loss in the local market. Examples include advocating for hearing loops in public spaces or getting a local movie theater to provide open captioned showings.
Online, there are many blogs, websites and Facebook groups where people with hearing loss can connect with one another, including mine — Living With Hearing Loss. Visit a few and you will soon see that you are not alone in your hearing loss struggles. Share your tips and suggestions and learn from others’ experiences. Many are warm and engaging communities. You will be proud to be a part of them.
Shari Eberts is a hearing health advocate, writer, and avid Bikram yogi. She is the founder of Living With Hearing Loss, a blog and online community for people living with hearing loss and tinnitus. She also serves on the Board of Trustees of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues. Connect with Shari: Blog, Facebook, LinkedIn, Twitter.