What causes hearing loss stigma? Does it come from within — our own insecurities about whether we are now as whole as we once were before we lost our hearing? Or from external factors like societal pressures that demand perfection and youth. For me, it started in my childhood, watching my father struggle with his own hearing issues. He wore one hearing aid, then two, but always kept his hair grown long over his ears to hide them, even when this was no longer in fashion.
Many of us with hearing loss battle stigma for years. We worry people will think less of us because we cannot hear well or that they won’t want to bother taking the extra effort it takes to communicate with us in certain environments. It can sometimes feel easier to disengage, sitting home alone rather than take the risk of social interaction. But we know that is not the right answer.
In We Hear You, our award-winning documentary about the hearing loss experience, we address this issue head-on. Each of the individuals featured in the film hid their hearing loss for many years — some more successfully than others. All kept their hearing aids hidden behind long hair and never told anyone about them. Until something changed. For each of us, once we learned to accept our hearing loss, the pressure receded. We felt better and we communicated better.
Do you recognize yourself in the captioned clip below?
To watch the full documentary, visit Vimeo On Demand. Ten percent of proceeds will be donated to hearing loss charities.
My Battle with Hearing Loss Stigma
When I was diagnosed with my own hearing loss in my mid-20s I was terrified. Memories of my father sitting alone flooded my thoughts. Would I now be the one missing whispered conversations? Would I spend my time sitting alone at social events sitting apart from family and friends? I vowed this would not be me, choosing to ignore my hearing loss instead, hoping foolishly that it might disappear.
I faked my way through important conversations and avoided colleagues at work that were hardest for me to hear. Denial and shame were my constant companions. It took me more than 10 years to shake them.
Eventually, my hearing loss worsened to the point where I could no longer fake it and still perform my job. But even when I finally purchased hearing aids, I didn’t always wear them. I would sneak them in before important meetings at work and rip them out quickly afterwards, never wearing them socially or at home. Sadly, I was following in my father’s footsteps of embarrassment and concealment.
My Children Taught Me to Accept My Hearing Loss
But then I had children of my own. I saw their tiny eyes watching me hide my hearing loss and being embarrassed by it, just like I had watched my father all those years ago. I was passing on the stigma that I had inherited from him. What if my children developed hearing loss as adults like I had? My loss is genetic so it is possible. Would they feel the same shame and discomfort? I needed to break the cycle. So I did.
I began wearing my hearing aids all the time, asking for quieter tables at restaurants, and teaching my friends and family the best practice communication tips that help me hear my best. I started volunteering at hearing loss non-profits and met other people who understood my struggles. They taught me the tips and tricks I used today to navigate life with hearing loss and helped me feel less alone. Finding others like me helped me heal.
Hearing Loss No Longer an Unmentionable Topic
Hearing loss is no longer an unmentionable topic in my family. We discuss it as often and with as little fanfare as my love of yoga or my poor sense of direction. It is just one part of who I am, and one that I no longer need to hide. I see my children watching me still, but this time they are learning the self-advocacy skills they will need if they develop hearing issues themselves.
My children helped me battle back stigma. I hope by sharing my story, I will help others to do the same.
Readers, where did you learn your hearing loss stigma?
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I guess I have been particularly blessed with no stigma attached to wearing hearing aids. As soon as I got mine 7 years ago, I was telling just about anyone who would listen, and I’ve never felt a need to hide them. At appointments, I say, “I’m hard of hearing. I do have hearing aids, but they’re not perfect.” So I’m so grateful for that freedom from stigma, while I’m also absolutely empathetic to those who struggle with it. The area I struggled in was feeling worthy enough to expect people to change their behavior so that I could hear. I was making small progress at being more assertive, and then I was diagnosed with a serious illness. Silver lining: my assertiveness abounds! I HAVE to hear what the doctors are saying. And I plan to never turn back. Good luck to everyone! Losing one’s hearing really sucks, but we can do so much for ourselves to make it suck less. Much love. Sue Ann (66 years old)
Thank you Sue Ann for sharing your story.
I have no hearing loss stigma. Sad, frustrated, yes, but not embarrassed . My mother is the one I inherited it from and she never was ashamed either. She was always worried about me losing my hearing. Hearing loss is not our fault , although my early 20″s time spent in jazz clubs that always resulted in my not being able to hear much for a day or two must have contributed to it. I tried to teach my children to take care of their hearing but two out of three of them are developing hearing loss anyway. My husband was losing his hearing as well, which I attribute to his using a chain saw without hearing protection. I had a hard time not to tell him. “I told you so”!
I am glad stigma has not been an issue for you. Thank you for sharing your experiences.
What do I do when people act like my hearing loss is a fault (like a bad habit or a bad quirk?) I have had people list others’ faults and then my fault was deemed to be my hearing loss. I have also been told that No one wants to hear others issues and to stop talking about my hearing loss all the time. I do not do this, but if a situation arises where my hearing interferes with things. I will try to advocate for myself. I have had people not want to get to know me or dismiss me as being stupid just because I cannot hear. I have gotten a lot better about advocating for myself since I have had my CIs. However it is irritating when I try to advocate for myself and people say to me, “But I thought you can hear now” Or I have been yelled at with the comment, “Will you listen!” When I have asked people to repeat. BTW, I gave the person who told me to listen a HUGE piece of my mind!!! She knows I wear Cochlear Implants, and I had told many times, my hearing will never be perfect.
If anything, I am glad to show people what my CIs look like. (Adult show and tell). I am in graduate school and I have shown a few classmates the app on my phone for my CI accessories.
I love how you are advocating for yourself! Keep it up! Thank you for sharing your story.
Shari so enjoy your columns, read them faithfully and have learned a lot! I show people my small diamond earrings (fake) and then show them “my diamond” earrings safe in my ears (hearing aids)…
any suggestions for those of us wearing hearing aids and working with masks? Afraid of losing tem taking them on and off wearing masks?
Masks are tough. Here is a post I wrote with some suggestions. Thank you for your comment. https://livingwithhearingloss.com/2020/05/12/masks-are-the-latest-obstacle-for-people-with-hearing-loss/
I have worn around-the-head and neck masks from the beginning. Check the internet and Etsy for suggestions under masks for hearing impaired, etc. Mine have elastic that goes around the back of my neck and over the top of my head. They do not tangle with hearing aids. Easy to lower that top elastic between errands and bring it back up when needed.
Thank you for sharing what works for you.
Unfortunately, the stigma will persist as long as hearing people believe they are more inconvenienced by someone’s hearing loss than the actual hearing-impaired person, as long as they believe hearing aids “fix” you like glasses do, as long as the hearing impaired are considered a joke, and as long as those with hearing loss don’t have the access or funds to acquire hearing devices that actually work for them. Too many purchase cheap devices and don’t wear them “because they don’t work.” I advocate as much as I am able, especially since COVID masking, but some days I’m too fed up to bother. People are idiots.
It can be very frustrating. Thank you for sharing your thoughts.
Shari: I just watched the “We Hear You” video. Now I need to go back and listen to it again – and maybe again – because I know I missed some of what was being said with the MUSIC PLAYING in the background. Even with the captioning; while I was reading that I missed what was showing on the screen. I admit it, I’m a slow reader. It would be much better if during the talking , there be no music. In real life I don’t hear music playing when I’m talking to someone, so why is it playing during the video?.
Thank you for this feedback. We are looking into adjusting the volume of the music.
My stigma came from having a parent who failed to advocate for me after my diagnosis of SNHL in grade school. I had just one doctor’s appointment and my hearing loss was never mentioned again in my childhood. I was also taught that you don’t burden others with your problems, so I had an unhealthy diffidence that covered any adversity, not just hearing loss. Sharing adversity, or even asking for help was NOT seen as a positive.
To counter the negative, my deaf grandmother—she was a lipreader like me, and her only sign language was finger spelling, which she taught to my sister and me even before I knew I had a hearing loss—was the person I most admired in life. I saw how capable she was even though she couldn’t hear. Of course, her knowledge and skill was limited due to the era and area in which she was born (early 1890s and rural Eastern Kentucky), but her matter-of-fact attitude about her hearing and self-sufficiency in many areas of her life was an example that led me to dig in and cope with hearing loss at a young age without much support. Of course I also credit the incredible brain for picking up the slack of my deficient auditory nerves.
I find each person’s story of hearing loss, the stigmas they learned; then overcame to be fascinating.
I do as well. Thank you for sharing yours.
I from China，The pain of hearing loss knows no borders.
So true. Hearing loss is a global issue. Thanks for your comment.
Shari
I got the Issue from my Dad. It was not looks or old, but his feelings re the cost of my Mother’s hearing aids, He kept saying, “she really does not need them” which really meant “they cost to much”. While growing up I knew she needed them as she kept asking me to repeat, And now looking back with my HLAA N-CHATT training I am pretty sure she had a profound loss. I am hoping that as more and more folks use earbuds etc. the stigma will diminish.
I hope so too. Thank you for sharing your story.
Hi Shari,
I’m glad to read that not everyone feels stigmatized by wearing hearing aids. I needed eyeglasses (at age 11) long before I needed hearing aids (age 60). No one ever made fun of me for wearing eyeglasses, and I simply assumed hearing aids would be treated similarly. We are fortunate to live in the times that we do, where hearing loss is no longer seen as anything to make fun of. Sometimes we may act as our own worst enemies!
What has taken me aback, however, is that my own grown children are frequently quite impatient with my hearing loss! Their speech, I’ve noticed, and the speech of their peers, is unbelievably fast. They seem to be unable (or unwilling) to slow down a bit so that it might be easier for me to take in what they are saying. Is there a connection here that I am missing? Do you think they are ashamed of my limited hearing ability even though I am not? (Frustrated, yes; ashamed, no.)
Sometimes our families are the least understanding it seems. I have trouble with my children’s rapid speech as well. All we can do is remind and remind. Thank you for sharing your thoughts.
I used to be so jealous of girls while in grade school back in the ’60’s and 70’s because they could wear their hearing aids and not have them be visible underneath their hair. Guys were not allowed to have long hair back then and my hearing aids were very visible for all to see over my ears. I cannot begin to adequately share the many bad minutes I had from my peers back then. Now in my 70’s, I proudly display my 2 Cochlear Implants with short hair because they give me a life being able to hear and interact with others with minimal difficulty supported with skilled lip-reading and the help of captioning.
Good for you! Thank you for sharing you experiences with stigma.