You Don’t Have to Go Through Hearing Loss Alone: Resources to Support You on Your Hearing Loss Journey
HearingTracker contributor Carly Sygrove tells about her early experience of hearing loss, resources that have helped her in her hearing journey, and information about helpful blogs, Facebook groups, organizations, and counseling and coaching options.
Hearing loss can have a significant effect on your quality of life. Communicating, particularly in noisy environments, can be challenging, and those affected may start to withdraw from social situations. Living with hearing loss can feel lonely, and it can be difficult for others to understand this unless they too have experienced the impact of hearing loss on everyday life.
Here I share my early experience of hearing loss, resources that have helped me through the years, and information about how you can feel empowered on your hearing loss journey.
The author in Denia, Spain, on the Mediterranean Sea.
The emotional impact of hearing loss
My hearing loss happened suddenly, meaning there was no time to prepare for the impact it would have on my life. After I had exhausted the treatment options, I was on my own to navigate my life without full sound. I didn't know anyone else with hearing loss. I was living overseas from my family, and I had no idea how to manage the practical or emotional effects of my loss.
I was grappling with feelings of sadness and loss. I lost so much more than just half my hearing. I struggled to do my job as an Early Years teacher, as I could no longer hear my pupils’ voices against the background noise of the classroom, and I couldn't understand speech in staff meetings when people raised their voices and spoke over each other.
I didn't know how to advocate for myself during the early stages of my journey. I didn't yet know what accommodations I needed to do my job to the best of my ability. I was still figuring it all out, and just trying to get through the days. The activities I previously enjoyed, such as the cinema, live music, dancing in busy nightclubs, and eating in noisy restaurants were situations I now avoided. I didn’t know who I was anymore.
But, with the help and support from others living similar experiences and a few additional tricks, I re-discovered my identity. I reignited the old me—just with some modifications—and began to embrace my life with hearing loss.
Teaching children in a noisy classroom and understanding colleagues during staff meetings presented problems before learning some hearing loss coping tricks.
How to connect with others living with hearing loss
There are various ways to connect with others living their own hearing loss experiences, such as following blogs, joining support groups, or even attending an event!
1. Follow a blog
There are many hearing loss blogs out there. Here are a few of my favorites:
Living With Hearing Loss
Shari Eberts is a hearing health advocate and writer who has adult-onset genetic hearing loss. She has recently co-authored, Hear & Beyond: Live Skillfully with Hearing Loss, with fellow advocate, Gael Hannan. In their book, they offer a skills-based approach to hearing loss that is focused not on hearing better, but on communicating better. In her blog, Living With Hearing Loss, Eberts shares her story and tips to help others live well with their hearing issues.
The Limping Chicken
The Limping Chicken is an independently-run deaf blog and news site, edited by deaf filmmaker and journalist Charlie Swinbourne. It features interesting, informative, and thought-provoking deaf blogs, news, and entertainment on the web, written by d/Deaf writers.
Hearing Like Me
Hearing Like Me is a news and lifestyle website for people whose lives are affected by hearing loss. This online community, which is sponsored by hearing device manufacturer Phonak, brings together people from all around the world with inspiring stories who offer d/Deaf representation across many different industries and experiences.
Smart Hearing
Journalist, author, and advocate Katherine Bouton has had progressive bilateral hearing loss since 1978. She uses a cochlear implant (CI) for one ear, and a hearing aid for the other. She has written several books about hearing loss, including “Shouting Won’t Help,” and “Living Better with Hearing Loss.” Her blog, Smart Hearing, provides strategies, skills, and resources for living well with hearing loss.
Just a few of the author's favorite blog pages that are filled with tips, advice, stories, and "life hacks" for living well with hearing loss.
Lipreading Mom
Shanna Groves started experiencing progressive hearing loss as a first-time mom at age 27. She has since gone on to have three children and shares her everyday experiences of family life as a mom with hearing loss in her blog, Lipreading Mom. Groves is also the author of “Lip Reader” and “Confessions of a Lip Reading Mom,” in which she shares her hearing loss experience.
Cochlear Implant Life
Cochlear Implant Life was founded by Aiden Toominator who in 1978 was diagnosed with hereditary sensorineural hearing loss. His hearing loss was progressive, and after an initial failed CI surgery, he had a second surgery that was a success. In his blog, he shares information, reviews, and stories from CI users.
My Hearing Loss Story
Ok, I’m biased with this one! My Hearing Loss Story is my personal blog where I share my experience of sudden sensorineural hearing loss and life with single-sided deafness (SSD). I write about how my hearing loss affects everyday life, and about living with tinnitus and balance disorders.
Many of these blogs also have associated social media pages you can follow too— just look for the social icons on the homepages.
2. Join a group
Support groups, both in-person and virtual, are taking place all over the world. The sense of community you get from joining a group can help you feel less alone in the hearing loss experience.
Your fellow group members will understand how you’re feeling—whether it’s celebrating a good communication experience or venting after a difficult meal out in a busy restaurant. Just be aware of the overly negative members and the occasional spammer who claims they can cure your hearing loss or tinnitus.
Joining a group and sharing your experiences and information about hearing loss is a great way to both give and receive practical knowledge while gaining support. Just ignore the trolls and snake-oil peddlers!
For online groups, be sure to check whether the group is “private” (only members can see who’s in the group and what they post) or “public” (anyone on or off Facebook can see who's in the group and what they post), so that you know who could potentially be viewing your activity.
On social media platforms, you will find numerous online groups and people to follow. Some of my favorites on Facebook include the following:
Hearing Aid Forum: Hearing Loss, Hearing Aids, and Cochlear Implants: The official consumer forum for HearingTracker. They welcome anyone interested in discussing topics such as hearing loss, hearing aids, cochlear implants, bone-anchored hearing aids, and other hearing devices.
Living With Hearing Loss Group: An online community, managed by Eberts, for people living with hearing loss and tinnitus.
Hearing Loss Community—HLC: A group for the deaf community. Members are encouraged to be open-minded and supportive.
Hearing Loss: The Emotional Side: Designed to help support people with hearing loss and anyone interested in understanding the complexities of hearing loss and emotions.
My Hearing Loss Story Group: For anyone whose life has been affected by hearing loss. I am the founder and administrator of this group, so I’m biased again! It is a space where you are invited to share your own hearing loss stories, ask questions, join in with discussions, and offer advice and support to each other.
If you're not a fan of Facebook, there is also a vibrant community of contributors on the HearingTracker Forum which is a large bulletin board with searchable topics.
Similarly, you can also find online support groups for other hearing health-related issues, such as tinnitus and balance disorders. Start by checking out: Tinnitus Sufferers, Meniere's Disease Support Group, and Vestibular Migraine Community.
3. Join a hearing loss association or charity
The Hearing Loss Association of America (HLAA) is the nation's leading organization representing consumers with hearing loss.
HearingTracker spoke to Meredith Resnick, HLAA director of strategic communications, to find out more about HLAA support services. “HLAA provides information, education, support, and advocacy for people with hearing loss throughout the country. For more than 40 years, we’ve worked for communication access and affordable and accessible hearing health care, on behalf of millions of people with hearing loss,” said Resnick.
HLAA Chapters provide a local network of support for members across the US. “Join an HLAA Chapter or tune into one of our educational webinars and learn from others who have the same experiences. Getting to know others with hearing loss, sharing in the HLAA community, and even paying that support forward to others is the best way to live well with hearing loss,” advises Resnick. “This is an excellent time to join HLAA, sign up for the free online Hearing Life e-News, and get the support and information you need.”
You can follow HLAA on Facebook, Twitter, LinkedIn, and Instagram.
Further support for individuals who develop hearing loss later in life can be found at the Association of Late-Deafened Adults (ALDA). The American Tinnitus Association (ATA) and the Vestibular Disorders Association (VeDA) provide support for tinnitus and balance disorders respectively. Parents of children with hearing loss may wish to look into joining the A.G. Bell Association.
4. Attend a HLAA event
“At HLAA events, including the Walk4Hearing, annual HLAA Conventions, and chapter meetings, we often hear various versions of the story that, “HLAA changed my life!” explains Resnick.
Walk4Hearing
Walk4Hearing events are held throughout the country to raise awareness and funds to support hearing health programs. These events often bring together families and young people with hearing loss, who see the importance of getting involved in community support and disability awareness. People often meet others with hearing loss for the first time and benefit from the shared experience.
One of many HLAA Walk4Hearing events.
HLAA conventions
“There is a stunning sense of relief in connecting with another person who has felt the shock of hearing loss,” write Eberts and Hannan. They strongly advise people with hearing loss to attend a hearing loss convention, where you can meet and bond with a peer group. They write, “Shari’s new hearing loss friends showed her there was nothing shameful about hearing loss and taught her tips and tricks she still uses today…Most importantly, she no longer felt alone with her hearing loss. She became part of a community of people like her.”
4. Explore difficult feelings through counseling
Michael Harvey, PhD, ABPP, a private practice psychologist in Massachusetts who specializes in hearing loss and tinnitus, explains that some of the negative psychological issues commonly experienced by people with hearing loss include the following:
Frustration for missing communication
Isolation
Anger at mistreatment by hearing people
Michael Harvey, PhD, ABPP
According to Harvey, counseling can help people with hearing loss come to terms with what they can and cannot control so they can learn to develop coping techniques. Counseling can help you understand more about yourself and discover changes that you might want to make to improve your quality of life and relationships.
Visit psychotherapy portals such as Psychology Today, the National Register of Health Service Psychologists, or the American Psychological Association to find detailed listings for mental health professionals in your area and online.
5. Feel empowered through coaching
Like counseling, coaching is a conversation and a relationship that explores your personal beliefs, values, behaviors, and purpose. It is a process that aims to help you achieve your goals and identify and overcome any obstacles. Coaching focuses on your strengths and abilities and can help you to build self-confidence and feel empowered.
Coaching focuses on the present and is future-oriented, rather than the past, which is one of the ways it differs from counseling, where patients may also address their childhood or other past experiences.
Counseling and coaching can help you understand more about yourself, overcome obstacles, and set and achieve your goals.
My online coaching practice is one of the few dedicated coaching services for people with hearing conditions. A fully-qualified coach, I specialize in coaching people affected by hearing health issues such as hearing loss, tinnitus, noise sensitivity, and balance disorders to move forward positively, achieve their goals, and live a life they are proud of.
Some of the themes I support my clients with include:
Exploring identity as someone with hearing loss and determining the life you want to lead
Limiting beliefs (that little negative voice in your head that holds you back from accepting great opportunities)
Changing your career
Overcoming feelings of low confidence and/or isolation
How to be your own advocate
and much more!
Interested readers can schedule a free coaching session, reach out via the contact page on my website, or follow me on Instagram for updates.
You're not alone! There is lots of support for people living with hearing loss
I have found that the hearing loss journey is not a linear process. Even after 6 years of living with hearing loss, I still have times when I’m challenged and must re-evaluate communication strategies and address new emotions.
Having hearing loss can be lonely, but you don't have to go through it by yourself. There are a millions of people with hearing loss (about 29 million in the United States), and there are many resources they can access that provide great advice and support. Connecting with others living similar experiences, or accessing support services, can help you to feel part of a community and empowered to take control of how you choose to live your life with hearing loss.