My father had hearing loss but never discussed it. His mother had hearing loss but pretended she did not. I spent 10 years in denial about my own hearing loss, and then another 10 years hiding it. So how did I become this new person, a hearing health advocate, and the writer of a blog entitled Living With Hearing Loss? Here is my story.
I grew up the child of someone with hearing loss. I knew it in a peripheral way—my father wore hearing aids, but they were never seen—always hidden by sideburns grown long for that purpose. He never discussed his hearing loss and went out of his way to hide it. I remember social gatherings where he would disappear only to be found sitting at a table in the corner by himself. I always wondered why, but now I know. He probably couldn’t hear and was embarrassed, or exhausted and just couldn’t bring himself to bother.
My Family Was Not Supportive
Looking back on it, I see that my family was not supportive of him. My mother would often whisper things to my sister and I behind his back saying, “Don’t worry, he can’t hear us.” Even as a child, I knew that wasn’t nice. But most of the time I was just unaware of the hardship he faced.
I sensed his embarrassment and the taboo nature of the subject, but didn’t dwell on it, being focused on myself as most children are. He never asked anyone to speak up or to face him when they spoke or position himself within the family group so that he could hear better. He never asked for a quiet seat at a restaurant or did anything to draw attention to his hearing loss. In fact, he would often fake it, pretending to hear what others said rather than admit that he couldn’t. It makes me sad to think of it.
Stigma Can Be Passed Down to Younger Generations
So when I first started having problems hearing in my mid-twenties at business school, I hid it, following his example. And when I got my first pair of hearing aids, I refused to wear them, afraid someone might see them. I was embarrassed. I am not sure why. Was it a learned response from watching my father, or was it something larger — the stigma associated with hearing loss in this country that I wanted to avoid? In any event, my mother’s reaction was not encouraging. “Do you really need to wear them?” she asked me.
Eventually, the answer became yes, I really did need to wear them, but still, I avoided them as much as possible. I remember surreptitiously putting them in on the way to work, wearing them all day hidden behind my long hair (easier for a woman) and whipping them out as soon as the elevator door closed behind me on my way out of the office. And when I traveled, I would sneak them in and out right before and after important client meetings. I got pretty good at it, but always worried if the telltale whistle would give me away. I hated my hearing aids and only wore them when I absolutely needed to, and never socially or with my family.
My Children Inspired Me to Accept My Hearing Loss
But then I had two children of my own, and this forced me to come to terms with my hearing loss. Since my loss was genetic, I worried that I might have passed it onto them. Given the adult onset nature of my loss, we won’t know for another 15 years, but I wasn’t going to sit idly by and wait to see. And if they did have an issue, I didn’t want them to feel embarrassed and ashamed of it. I needed to come out of my hearing loss closet. So I did.
Around this time, I left my work on Wall Street and started looking for some way to get more involved in the hearing loss space. I was lucky enough to become involved with Hearing Health Foundation (HHF) and found my way onto the Board of Directors. Before long, I was the Chair of the Board. My work with the foundation has been a good excuse to be more vocal about my hearing loss.
My friends asked me why I was devoting my time to HHF and I would tell them about my hearing loss. Most of my friends had no idea, and none of them cared. And when I meet new people, they don’t care either.
What had I been so worried about? In fact, most of the time I talk about it, the person tells me about his or her own issue with hearing loss or tinnitus, or that someone in his or her family or a close friend has hearing loss. This isn’t really that surprising given that there are nearly 50 million of us with hearing loss in the US alone.
And Now I am An Advocate for People Like Me
As time goes on, I have grown bolder. I now regularly advocate for myself—asking for quiet tables at restaurants, using caption readers at the movies, and rearranging the seating at family dinners to make sure I can hear and participate. I even started this blog, where I discuss my hearing loss and what I do to cope.
My hope is that my story will inspire others to come out of their hearing loss closets. There is nothing to be embarrassed about. Nobody will care, and in fact, they probably already know. Plus, being open about your hearing loss sure takes the pressure off having to hear everything perfectly all the time! And what a relief that is.
Readers, do you tell others about your hearing loss?
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Mine is very similar to your own.
Thanks so much for sharing your experience. It helps me to know others can relate to my story.
I was misdiagnosed as Asphasic and Mentelly challenged until 16 . Finally diagnosed as hearing impaired. Thankfully I was a reader with less impact on my education. My “teacher” at Abington Friends School in Kindergarden, Mrs Warden took her free time to teach me to read ( a tale of Peter Rabbit) and I have not stop yet. Interestly before correct diagnosis, I hid a useless hearing aid ( better to understand not for hearing)
After correct diagnosis, I revealed the loss . I was not properly fitted with two hearing aids until in my 40’s though. Strange
I find before the ADA I got jobs with ease. After the ADA the opposite happened so I became an animal care specialist and photographer. People tends to not want to deal with me because of having a loss. I cannot hidecthe loss because I sound like I have a loss.
Thank you for sharing your story.
Reblogged this on ENT&Audiology Associates and commented:
This is a great blog post by Living With Hearing Loss!
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Thank you for sharing my story.
I agree that people don’t care, but not in the way that you mean. I think people don’t care in that they both don’t understand and don’t want to know about it.
With respect to not understanding: it’s hard to know what “hearing loss” means exactly. Deaf, we understand – you can’t hear anything. But hard of hearing? What exactly does that signify? You can hear some things but not other things? I have bilateral cochlear implants as of two years ago (lost my hearing gradually starting in childhood; first moderate and recently severe-profound) and even I can’t quite comprehend the hearing loss”of anyone else. What do you hear and what don’t you hear? For some people, high frequencies are tough; for others, it’s the low. Others still have “cookie bite” hearing loss wherein they hear the high and low but not the middle. It’s hard to grasp.
With respect to not wanting to know about it – in my experience, people expect you to just deal with it and fix it. Especially in the work force. Get the very best hearing aids. If these no longer work, get an implant, or preferably two. After losing not one but two jobs due to hearing loss, I decided to deal with it. When one implant wasn’t enough I got a second one. Now my hearing is stellar. I don’t hide and I’m not ashamed, but I don’t talk about it at work. Now that I hear almost as well as a person with normal hearing, I have nothing to tell anyone. I can hear again. I can talk on the phone. I continue to read lips and sit up front.
I’m a freelancer now and my clients don’t want to know. I made the mistake of divulging and it hurt me. So I won’t again. My long curly hair hides both CIs.
That doesn’t mean I don’t advocate for hearing loss. I’m involved with HHF too, as well as HLAA. I share everything from HHF and HLAA on Facebook to raise awareness. But talking about my hearing loss, especially at work, turns people off, so I don’t. Like you said, nobody cares.
Thank you for sharing your experiences. We have a lot to learn from each other.
I can relate to your story. I use yo hide my hearing loss, fake it and pretend that i can hear, etc. And most of all, i dont have my own identity. Now, i was able to cone out of closet and accept my hearing loss. Im now leading a group of Hard of Hearing persons in my country, one of the Hard of Hearing leaders in Asia Pacific and currentl working in a top government agency.
Congratulations! Thank you for sharing your story.
I totally relate…I have come out of the closet….mixed reviews and sometimes hurtful and stupid comments. What is great is that there are some many people with different degrees of hearing loss and wearing hearing aids that also come out of the closet. I am profoundly deaf in my left ear and some hearing in my right.
Thank you for sharing your thoughts with me. It is helpful to know there are others who have the same struggles.
I have had a diagnosed hearing problem since I was eight years old. (i’ll be 25 this month). According to my mother, I have probably always had it, but finding the problem was half the battle. Growing up with a hearing problem was a stigma in itself. It always left me feeling, “different” and thrown into a “different group”. I wonder to myself how as a child I didn’t end up suffering from depression or anything else when my “problem” became public knowledge.
I’ll never forget that morning back in 4th grade when I had to stand in the front of the classroom as the teacher explained to the class that I had a hearing problem. I was beginning to use a device for school called the FM system, ( I am not sure if it is still referred to as that, but this was before I got my own hearing aids). So my first coming out wasn’t even by my own choice. When everyone had a chance to talk to me at lunch time, I was given pity, “oh I’m so sorry” “Have you always been like this” “does it hurt” and it goes on… The funny part was, those who would ask, never really acknowledged my existence before. As a nine year old kid, I learned that I don’t want sympathy and pity for something that I had to some how learn to live with, I just wanted to be a “normal” kid. I won’t lie, this was traumatizing for me. I was pretty sheltered by my parents and was quiet, I never had anything really happen to me like this.
The following year when my parents decided that I needed my own hearing aids, hiding the “problem” became much easier. Thank goodness I had long enough hair that covered my ears, I never had to disclose to my peers that I wore hearing aids. All of my school teachers knew, I had an IEP meeting every school year until I graduated high school. I wasn’t comfortable showing my ears or moving my hair until I was in high school. My friends changed, I started changing and l was finally thought I was accepting the one thing that I can never change. I started to share my secret, everyone I told didn’t care, it didn’t change who I was and it was left at that. Sharing was still hard at this time, but I was more comfortable.
As an adult, I have met so many other people who also are hearing impaired. It was so wonderful to be reassured that I wasn’t the only person in the whole world who is. As a child, I was so uncomfortable sharing because of fear. I finally became 100 % comfortable when I attended college. As a social work major, sometimes class would cause you to dig deep enough to the core of what your ashamed of. It happened to me, I cried when I had to explain why my parents were one of my most important advocates. It brought me right back to that day in fourth grade when I wasn’t brave enough to cry in front of everyone and let my shame and feelings out. At that moment, the teacher walked up to me, put her hands on my face and told me, “this moment is beautiful.” Tears running down my face, I was so flabbergasted that someone would say that to me. I haven’t been uncomfortable sharing since. It only takes one person or moment to create an epiphany for someone.
I went on to graduate college and I even got a job in my field. Its amazing and honestly, if it weren’t for my hearing aids I don’t think I could live a productive life. I can work, communicate efficiently. Are there times my hearing is still bad, YES, that will never go away. I do what I can to make sure I am listening and taking in all of the important information I need to know. Anyone who I meet or work with are so surprised when I disclose that I am hearing impaired. My speech is very good, so unless I share no one would really know. A lot of times, people think my hearing aids are ear piercings.
Funny how you have to learn to live with being hearing impaired. I happened to have learned at an age where things became even more confusing. No matter who knows about it, or what anyone truly thinks, its apart of you, embrace it. My apologies for turning this into more of a story about discovery than about sharing. But the sharing and discovery all kinda fell into place together. All of our stories are different, sharing mine is liberating now. 🙂
That is a wonderful story! Thanks so much for sharing it with me.
Yes, I do tell everyone! My hearing loss is too bad now to fake it so the extra practice helps me be comfortable too. There is nothing to be ashamed of – I didn’t cause this loss, but I chose what to do with it. And you are right – nobody usually cares too much. I carry my caption reader through the theatre with pride now hoping it will encourage others to do the same. Thanks for sharing!
Glad to hear! Thank you for sharing your story too. The more of us that do, the better others will feel about their own hearing loss.
When I began wearing hearing aids add a marketing manager for an international company in Chicago, I told everyone! In fact, events in my travels made me aware of the impairment. I WANTED folks to know so we could communicate better. Perhaps I had a rare experience but perhaps again it was how I presented it. I cannot remember anyone ever being disrespectful, but more accommodating instead. During the 25+ years with my company they even purchased a set of digital aids with all the accessories to help me in conferences and multiple conversations. Profound loss finally caught up with me but last year I was implanted with cochlear. I have become even a greater advocate for hearing health because the cochlear seems to open more doors for conversations and opportunities to encourage others to treat their hearing loss, to make the most of their hearing aids, and that there is a possible solution when hearing aids are no longer enough. Also a HLAA member but my outreach goes far beyond to education and encourage. Thank you for the work you are doing. Just discovered your blog while doing a Bible study on hearing! Amazing that survival skills and good practices for hearing loss are found in the Bible through a little searching. Oklahoma City
Great to hear about your good experiences at work. Thanks for sharing and for reading the blog.
I grew up in a hearing world and used to act like that. It was not a downright denial or hiding, but I just didn’t want to be different. After 2007, when my hearing loss went from middle to sever hard of hearing, there was no way around it. But it is only the last 5 to 6 years, I really stand to my hearing loss and actually talk about it and now, since a year, share it with others as well in my own Blog. Quite a step, but certainly no regrets.
Thanks for sharing your experiences. It is a big step, but so worth it!