I grew up thinking hearing loss was shameful, something to be hidden and never discussed. I learned this from my father, who had hearing loss. So did his mother. It was genetic, and he passed it onto me, along with the stigma. I needed to accept my hearing loss to break the cycle for my children.
“Don’t worry,” my mother would say with a dismissive wave of her hand as my sister and I would glance over at my father, “he can’t hear us.” As young children, we thought this was mean, but didn’t dwell on it, preferring to continue our “secret” talks with our mother. We learned to exclude my father because of his hearing loss and to use his issue to our advantage in plotting shopping trips or the like. Thinking back on it, I am appalled.
My father had a hard time coping with his hearing loss, which began in adulthood. He was embarrassed by it and hid his hearing aids behind sideburns grown long for that purpose. This looked fine in the 1970s, but a bit odd as hairstyles changed with the times.
He never mentioned his hearing loss within the family unit, at work or with friends. He never asked us to speak louder or to be sure to face him when we talked to him so he could hear us better. He never rearranged the seating at dinner or at a social event so he could participate. His fear of discovery guided his choices, and overtime he became increasingly isolated from us all.
It was not entirely his fault. My family was obviously not supportive of him, but by keeping his hearing loss a secret, he also alienated co-workers and friends. His career stalled, my parents stopped entertaining and their marriage deteriorated.
So when I first suspected that I was losing my hearing, I was horrified. I chose to ignore it and bluff my way through situations where I couldn’t hear, following in my father’s footsteps. At some point, I broke down and purchased hearing aids, but I rarely wore them, and if I did, they were hidden away behind my long hair. I was always afraid that someone would discover my charade.
This continued for a decade, with only my husband and one or two close friends in on the secret. I started to need my hearing aids more and more, but I still only wore them at work and never socially. I became skilled at emulating the expressions of friends to give the impression that I was following the conversation. I missed many punch lines of jokes, but laughed nonetheless.
It was exhausting and I started to avoid certain friends and work colleagues who I could not hear well. The stigma of hearing loss was firmly ingrained in my mind. I lived in fear of discovery. But once I had children, I realized that I needed to make a change. I did not want my children to make the same mistakes that I was making.
Because my hearing loss is genetic, I may have passed it onto them. I saw my children watching me sneak my hearing aids in and out and pretending to follow a conversation when I did not. I was passing on the stigma and shame and I knew this had to stop. I needed to come out of my hearing loss closet. So I did.
I joined the board of Hearing Health Foundation and later Hearing Loss Association of America (HLAA). When my friends and colleagues asked me why I was involved with these organizations, I would tell them about my hearing loss. In most cases, people would respond by telling me about their own trouble hearing, or that a relative or close friend had hearing issues. This should not have been too surprising since there are 50 million of us in the US alone, but I was amazed. Why had I been so afraid?
It got easier and easier to admit. I began asking for quiet tables at restaurants and mentioning my hearing loss at the start of a meeting to make sure I had an advantageous seat. I even started a blog called LivingWithHearingLoss.com to share my experiences with hearing loss and to inspire others to live more comfortably with their own hearing loss. What a relief it has been to be out in the open.
My children have noticed the change. They discuss my hearing loss openly, helping me find the best seat at the dinner table so I can hear, and watch TV with captions without complaint. They participate in the annual HLAA Walk4Hearing and wear earplugs to protect their own hearing at loud events. I don’t feel excluded from the family unit because of my hearing loss. It is just part of the regular family dynamic.
I hope my children will not have trouble hearing, but if they do, I know they will approach it with a better attitude and a more complete tool kit for surviving and thriving than I did. I am grateful for their inspiration in finding my way out of my own feelings of stigma and shame. It was the least I could do for them.
Readers, what have you learned from your hearing loss mistakes?
This post first appeared on The Good Men Project.
Living With Hearing Loss is also on Facebook & Twitter.
My mother suffers from hearing loss and she does the same thing. She tries her best to hide it and it is sad to watch. She misses so much by being stubborn.
It is a big problem. I am so glad I was able to move past it eventually, but it is a struggle. Thanks for sharing your experiences.
My 3 year old was born with moderate hearing loss. It doesn’t appear to be genetic. He is thriving! I am constantly trying to figure out how to help him build confidence and a positive self concept. Blogs like your help me a lot. Thank you for sharing. Thank you for your honesty. You are helping me help my son!
Best of luck to both of you! So glad you are finding the blog helpful.
My family was similar to yours. My father had hearing loss that he masked, probably more than we knew. He became isolated and I never understood why – until I ended up with the same hearing loss. He had hearing aids but really couldn’t hear out of them and I doubt if they compared well to what we have today – he died over 20 years ago. He was previously a very sociable person and continued trying to be that way. But when you mention about excluding your father, it really hit home with me as well. But I’m not sure if that just applied to hearing loss – it seemed for any disability we had less empathy than today.
That is a good point. The times are changing and hopefully that will work against stigma. Thanks for sharing your thoughts.
I’d have to say that the biggest mistake I have made in my hearing journey was to be too passive in the treatment of my disability. For decades I leaned on the judgement of audiologists who I believed would tell me everything I should know to live as full a life with hearing loss as possible. WRONG!
About a year ago I began a program of self advocacy and as a result am now associated with people who not only know but share their knowledge and expertise with one goal in mind: to help me have the fullest experience possible with my hearing loss.
Also, when I first began wearing HAs, they were invisible in the ear canal. People did not know I had hearing loss. As a result – even though I was treating my condition – my hearing was not perfect and I did little to “optimize” my hearing environment. What was I thinking? That if others did not know of my hearing loss I would hear better??? It’s a form of delusional thought, I am sure. And it was a mistake.
Great points Jerry! Thanks for sharing your mistakes so others won’t make the same ones. Good for you for taking charge of your hearing.
My grandmother had hearing loss and so do I. She spoke really loud so I worked really hard at not ‘shouting.’ I’m so happy to hear you are comfortable with your disability, it’s not easy,
It definitely took some time for me to accept. Thanks for sharing your story and your encouragement.
We have genetic hearing loss and deafness too. My oldest is deaf completely in one ear. He does hate it and I raised him to accept, acknowledge it but don’t let it define him or hold him back from achieving what he wants to.
Great advice for your son. Good luck to both of you.
I work in the field of helping people who have hearing loss (predominantly the aged) and the majority are aware of their own loss but not aware of how to get their friends and loved ones to understand how to cope with their inability to hear everything.
Couples who have yelled from one room to another over the years, now have to adjust how they communicate.
Grandchildren who won’t talk to Grandad because they don’t want to have to repeat EVERYTHING.
The embarrassment of answering the question “incorrectly” because they only heard a key word and filled in the blanks (with what they think was said!)
I used to turn my head whilst speaking, looked down concentrating on what I was writing and spoke too quickly. I have made SO many self adjustments so “I” can be heard more clearly.
The key is communication – telling it how it is, asking questions – “what is best for the Hearing Loss sufferer?”
I have seen lives changed with just the smallest adjustment and I often refer to your blog …
Keep up the communication!! All the best.
So true. Communication is the key and takes effort from both sides. Thanks for your comment.