End your Isolation – Join a Hearing Loss Support Group
There are a staggering number of people with hearing loss – close to one-in-six globally – and most of us are not getting the help we need. In fact, the National Academy of Sciences, Engineering and Medicine (NAS) reports that 67-85% of those with hearing loss still do not or will not wear a hearing aid. The reasons vary from person to person, with the most common being a lack of education on the signs of hearing loss, denial, social stigma, and the cost of hearing aids. Given the alarming statistics cited above, it’s clear that we are not doing enough to support (financially and otherwise) those who could benefit from hearing aids.
The larger hearing loss community encompasses every population, age, and economic group. Most of us know someone with a hearing loss. It’s your boss, your customer, the person sitting next to you in church, the professor or student in a college classroom, the checkout clerk at your local supermarket. But because it carries with it a social stigma, many are in denial and reluctant to acknowledge or expose their hearing loss (by wearing a hearing aid), or even reach out for help.
Those who do seek help may know something about otolaryngologists (ENT’s), audiologists and hearing rehabilitation specialists. But many of us find it insufficient to rely exclusively on the information and support provided by these professionals. Sometimes it takes direct communication with other hearing loss “sufferers” to help us to live with and move beyond our hearing loss
It took me many years to appreciate the importance of interacting with the hearing loss community. I spent more than three decades avoiding interaction with others like me. I never wanted to see myself as part of an outlier disability group or demographic. I was a “fully” functioning human being, I believed. I just couldn’t hear well. The hearing loss community focuses on hearing loss and I didn’t want to do that. I was upgrading my tech and trying to stay ahead of the curve so really, what more need I do? The irony, of course, was being a hearing health snob who thought he knew best while only further isolating me from the help I needed.
It was clear what I should have done. I was alone much too often and for far too long and as the result much of my life was lived in a self-imposed hearing exile. The isolation I endured over that period of time had a tremendous cost. Yet in that regard, I was not unusual and isolation is one of the most challenging issues for all of us with hearing loss. New research suggests that untreated hearing loss and social isolation are both strong risk factors for dementia.
Joining the Hearing Loss Community
So where do we go to find people, places and things that might pull us out of our self-imposed isolation? The good news is that there are myriad hearing loss support groups across the country, many of them nearby, with interesting people, in and out of the box resources, social and educational activities, and emotional support that can fill in the gaps. And there will be gaps. Support groups are lifelines for the “hearing lost” that surprisingly are underutilized.
Support groups have much to offer that you cannot get anywhere else. Most if not all states have their own agencies or commissions on deafness and the hard of hearing that provide leadership, advocacy and education and can lead you to multiple resources often just a phone call, text, or email away.
You’ll find support groups in your state – sometimes multiple support groups – that hold regular meetings, conduct workshops, hold regional and national conventions, offer speakers, social events and activities as well as websites and Facebook Pages for easy connections and each with many more links with ever more information and resources.
As I have, you will find a vibrant and diverse community, from all walks of life and circumstances, people with interesting lives and stories to tell. Many of them have spent large chunks of their own lives isolated and cut off as well.
Our colleagues and peers in the hearing loss community have experiences and know things that even the professionals we work with cannot tell us. Collectively, we know the drills: how to hear and make adjustments when we’re challenged; how to survive in public places; how to talk about our lives and how to engage others regardless of our situations. We also know how to communicate in a variety of settings, with a variety of tools – not just with hearing aids and cochlear implants, but through lip reading, sign and body language, and especially with cutting edge assistive hearing devices and the latest tools, toys and apps.
Most importantly, hearing loss support groups (see below) can help you to become your own best advocate. to take charge of your hearing experience, make the best use of technology, interpret the latest research, and identify the wide variety of services available that can build your confidence and enhance your communication skills.
Isolation is a Choice
Isolation from hearing loss is not a fait accompli, it’s a choice that we make. Learning to live with and move beyond hearing loss involves too many steps and covers too much terrain to reside solely in the domain of the medical and technological professionals. The very personal, emotional, psychological and behavioral issues we encounter involve family, friends and relationships of every kind. They touch our interactions in the work world and the marketplace, the activities of our daily living from sun up to sun down. And they impact every aspect of how we manage and cope with a host of situations and circumstances that we ultimately find ourselves in.
Within support groups, the chances are now greater than ever before to meet new people with similar and diverse backgrounds, skills and interests – to enjoy a conversation, go out to dinner, travel, see a show, or take a walk without feeling the need to explain ourselves. Above all, to laugh, love and enjoy life like everyone else. Email, texting and Twitter have been a godsend for us for sure, but nothing beats a real face, a voice and a soulful connection.
Expand your universe of friends and colleagues in the hearing loss community. End your hearing loss isolation. Join a hearing loss support group.
It will change your world.
Reach out to these support groups and look for local affiliates near you.
- Acoustic Neuroma Association (ANA)
- Alexander Graham Bell Association for the Deaf and Hard of Hearing
- Association of Late-Deafened Adults (ALDA)
- Hearing Loss Association of America (HLAA)
- The NF2 Crew
- SayWhatClub (SWC)
- Hearing Aid Forum
For introductory information check out Hearing Tracker’s hearing loss, hearing aids, and tinnitus resources.
Stu Nunnery is a writer, speaker, recording artist and hearing activist. He has recently returned to making music after a 35-year hiatus and presents workshops and performances about his journey with bilateral hearing loss.
Last modified: January 29, 2018