Changing Mindsets about Hearing Loss — Blog

Social misperceptions about hearing loss can prevent people from seeking the help they need. And even when we seek help, our doctors can minimize the condition, brushing it aside as a normal part of aging. The same goes for policymakers who have historically left hearing care out of many public insurance plans. This years World Hearing Day is about changing mindsets about hearing loss in hopes of making “ear and hearing care a reality for everyone!”

Hearing loss has often been referred to as an “invisible disability,” not only because of the lack of visible symptoms, but because it has long been stigmatized in communities and ignored by policymakers.

Tedros Adhanom Ghebreyesus, Director-General of the WHO

World Hearing Day 2024 logo and web banner

My opinion on the change of mentality

My father had hearing loss but never talked about it. His mother had hearing loss but she pretended not to have it. I spent five years denying my hearing loss and then another 15 years hiding it. Because?

Two reasons: stigma and lack of urgency from my healthcare providers.

I was recently asked to share my experience with hearing loss at the World Hearing Forum stakeholder meeting to start the group discussion on mindset change. In honor of World Hearing Day 2024, I share these comments below. I hope they spark your own conversations about the stigma of hearing loss and encourage you to help advocate for better hearing care for everyone.

The stigma of my hearing loss started at home

I first noticed my hearing loss when I was in my mid-twenties in graduate school, but my journey toward hearing loss began much earlier, when I was a child and watching my father struggle with his own hearing problems. He was very stigmatized by his hearing loss and would do almost anything to hide it.

He wore hearing aids, but they were never seen, always hidden behind sideburns that had been made long for that purpose. I remember social gatherings where he would disappear and be found sitting alone at a table in the corner. As a child, I didn’t understand why, but when I developed my own hearing loss, I knew. He probably couldn’t hear well in the noisy party space and was embarrassed and exhausted and just couldn’t keep trying.

My father never asked anyone to speak louder or look in front of him when they spoke, nor did he try to position himself within the family group so he could hear better. He never asked for a quiet table at a restaurant or did anything to draw attention to his hearing loss. In fact, he often pretended, pretending to listen to what others said instead of admitting that he couldn’t. His greatest fear was that his secret would be discovered and because of this fear he eventually isolated himself from everyone and everything he loved.

Not surprisingly, when I started having trouble hearing in class in graduate school, I was terrified. Will I soon be the person sitting in the corner at parties alone?

Providers Ignored My Hearing Loss and So Did I

Despite my fear, I went to get my hearing tested. I don’t remember much about that first appointment, other than the result: mild hearing loss. They told me it was too mild to treat, and even though I was missing things in class, they dismissed me without help. The provider did not even suggest that a different seat in the classroom might be helpful.

Thinking about it, I don’t feel like they took my hearing difficulties seriously. They certainly didn’t offer any solution, but they told me to come back when things got worse. It was the perfect excuse to ignore my hearing loss for several more years. Which I did.

My hearing worsened and years later I bought my first pair of hearing aids. But I often refused to put them on for fear of someone seeing me. I felt ashamed and embarrassed. I wasn’t sure why. Was it a learned response from watching my father, or was it something bigger: the social stigma associated with hearing loss that I wanted to avoid? In any case, my mother’s reaction was not encouraging. “Do you really need to use them?” she asked me. Families can also be stigmatized by hearing loss.

In the end, the answer was yes, I really needed to use them. Still, I avoided them as much as I could. I remember sneaking them in before important meetings at work, wearing them hidden behind my long hair, and taking them out as soon as the meeting was over. I got pretty good at it, but I always worried that a telltale whistle might one day give me away.

Having children helped me change my way of thinking.

But then I had my own children and everything changed. Since my hearing loss is genetic, I was worried that I had passed it on to him. I saw them watching me do the same things I had seen my father do: hide my hearing loss and laugh at jokes he hadn’t heard. I realized that he was passing the stigma on to another generation. To break the cycle, I needed to accept my hearing loss. So I finally did it.

I started wearing my hearing aids all the time and working to educate my family and friends on how they could help me hear them better. They helped me request quieter tables in restaurants and use closed-captioning devices at the movies. I refuse to let my hearing loss isolate me. It’s hard work, but it’s worth it.

Promotion helps me give back

I soon dedicated myself to defense. I started this blog to share my daily ups and downs with hearing loss and the tricks I use to live well with it. I later joined Hearing Loss Association of America, where I am now on the national board. For the first time, I met other people with hearing loss and began to feel less alone in my struggles.

I began speaking at audiology conferences and aging conferences to share the perspective of the person with hearing loss. I want the broader healthcare community to understand the ways hearing loss can impact all aspects of life. The way it can separate you from the people and activities you love. But also the ways it can be treated to improve life and personal connections. My hope is that one day the medical community will take hearing loss as seriously as they do other sensory disorders.

During the pandemic, my advocacy expanded to include the hearing loss documentary. we hear you. and I wrote the book Hear and Beyond: Living Skillfully with Hearing Loss with fellow defender Gael Hannan. Through my advocacy, I hope to help others live more comfortably with their own hearing problems as well.

Help support World Hearing Day

World Hearing Day It is held on March 3 each year to help raise awareness about preventing deafness and hearing loss and promoting ear and hearing care around the world. This year’s theme is changing the mindset about hearing loss. Join!

With your help, I am hopeful that one day we will all live in a world free of the stigma of hearing loss. And one where access to quality hearing health care is available to everyone.

Readers, will you help celebrate World Hearing Day?

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Book: Hear and Beyond: Living Skillfully with Hearing Loss

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