Like most people, I began my hearing loss journey alone, weighed down with stigma and unsure how to best navigate the world with hearing aids. I didn’t know any other people with hearing loss that I could ask for guidance. My father, bogged down with stigma of his own, was no real help. I often felt like I was on my own with this huge challenge, increasingly disconnected from family and friends that did not understand my struggles. Once I found my way to a hearing loss support group, this all changed.
There, I met other people with hearing loss and realized that I was not alone. Many people suffered hearing loss exhaustion at the end of a long day of listening, found background noise debilitating and loud sounds painful. My hearing family never seemed to understand what I meant when I complained about those things.
Finding hearing loss peers showed me there was nothing shameful about hearing loss. I was amazed at the wonderful things other people with hearing loss were accomplishing in their lives. It gave me hope that I too could lead a dynamic and happy life despite my hearing loss. Most importantly, I no longer felt alone with my hearing loss. I was now part of a community of people like me.
Audiologists: Please recommend peer support groups to your patients
Support is important for anyone facing a new challenge. Hearing loss is no different. Audiologists are often the first place people with hearing loss turn when searching for information about their condition. Share facts and analytical information, but understand that the emotional aspects of hearing loss are equally important to treat. You can help do that by encouraging your patients to seek out a hearing loss support group.
Hearing loss support groups help break down stigma, provide comfort, reassurance, and camaraderie. Hearing loss peers will teach your patients important hacks for living life to the fullest. This includes advice on communication best practices, recommendations of useful hearing assistive technologies and tips for advocating for the assistance they need. Your patients will thank you for the introduction.
Many hearing loss support groups exist
Hearing loss support groups can take many forms. Some convene monthly through in-person sessions, while others meet online. I participate in both types of groups, and find value in each one. Whatever your patient’s chosen path, peer interactions will give them an important community of people with shared experiences and help them learn valuable coping strategies for living their best life with hearing loss.
In-person peer support
Hearing Loss Association of America (HLAA) runs the largest group in the United States, operating more than 130 local chapters and holds a national convention for people with hearing loss each year. Here is a list of HLAA’s local chapters. Hearing Link runs similar clubs in the United Kingdom; you can find a list of their clubs here.
Monthly meetings typically feature speakers on hearing loss related topics including travel tips, how to find an audiologist who practices person-centered care, or handling hearing loss in the workplace. There is also time for socializing with other people with hearing loss. Audiologists are welcome to attend. Please do. It is a wonderful way to become involved in your local hearing loss community and to better understand the challenges and concerns your patients face. You might volunteer to speak at one of the meetings.
If a local chapter of a hearing loss support group does not exist in your area, consider starting one of your own. Ida Institute has tools for launching and facilitating such groups. Benefits include providing your patients with peer support, improved self-sufficiency and emotional well-being, as well as allowing you to counsel multiples patients at once. Certain sessions could be focused on improving your patients’ comfort with technology, boosting satisfaction, and lowering return rates.
Online peer support
Online peer support includes blogs, websites and Facebook groups where people with hearing loss can connect with one another more anonymously. Hearing loss companies and other commercial entities sponsor some of them. Others, like mine — LivingWithHearingLoss.com — are operated by people with hearing loss. Mayo Clinic, in partnership with HLAA and Ida Institute, launched its Mayo Clinic Connect discussion forum for people with hearing loss in February 2019.
Online communities may be a good first step for patients who are still battling stigma and denial about their hearing loss. Recommend they visit a few different online communities to find the ones that feel right for them. Many are warm and engaging.
For someone struggling to understand and accept their hearing loss, peer support — either in-person or virtual — can make all the difference. It certainly did for me.
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 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. She recently authored, “Person-centered Care from the Patient’s Perspective,” an ebook detailing her experience with hearing loss. She hopes the book will provide audiologists with valuable insights they can use to make their practices more person-centered. Connect with Shari: Blog, Facebook, LinkedIn, Twitter.