Do You Know What Caused Your Hearing Loss?

I lost the hearing in my left ear suddenly, when I was 30. One morning, working at home, I picked up the phone to answer a call and couldn’t hear anything. I switched ears. The right ear was fine, and I talked to whoever had called. When I hung up from that call, I called various automated numbers – in those days you could call the weather, the time, and others. I switched from ear to ear, no sound in the left, normal in the right.

There had been no indication that anything was wrong. No pain, no popping or whining. But as the day wore on I realized everything was too loud, I was suffering from hyperacusis. And I felt dizzy. I went outdoors to clear my head, but the street noise was assaultive, so I scuttled back inside again.

I found an ENT, who ordered an MRI to rule out an auditory neuroma or structural damage in my ear. I had a series of blood tests to rule out autoimmune disease. All the tests were  normal. My diagnosis was idiopathic sudden sensorineural hearing loss. “Idiopathic” means of unknown origin. Ninety percent of sudden sensorineural hearing loss is idiopathic.

For years, the term idiopathic and the lack of an explanation for my loss tormented me. If I could find the cause, maybe I could find a cure. Over the next three decades, I lost the remaining hearing in my left ear and my right ear declined as well. By the time I was 60, I was functionally deaf. And angry. How could there be no explanation for such a monumental change?

Idiopathic: A disease or condition for which the cause is unknown.

Eventually, I learned to hear again with a cochlear implant and a hearing aid. But even as the technology got more and more sophisticated, the science lagged behind. No one could find a cause, and no one could find a cure. So my rage and despair continued. These emotions are not good for your health.

In her new book “The Invisible Kingdom: Reimagining Chronic Illness,” New Yorker writer and poet Meghan O’Rourke writes about her decade-long battle with an amorphous, systemic disease that her doctors now think was lingering Lyme disease complicated by other autoimmune conditions. These conditions worked together to leave her in debilitating pain and brain fog for long periods of time. Perhaps most frustrating was the lack of an explanation for her illness. She writes that she “craved” a diagnosis. Diagnosis “is a form of understanding,” she writes. The term itself derives from the Greek word “to know.” For her, that knowledge “brings the hope of treatment or cure.”  Eventually she got a partial diagnosis and was able to resume a more normal life – and to write an excellent book.

I had a diagnosis: sudden sensorineural hearing loss. But once my other ear became involved and as the loss worsened to profound in the original ear, that term no longer applied. I was left with no diagnosis, no explanation, no cure. And ever worsening hearing.

Eventually – and I mean really eventually (think decades not years) — I accepted that I’d never know what the cause was. I was able to come to terms with it. Only then could I start making a new life with my hearing loss. It took hard work, supportive friends, sophisticated technology, shared experiences and tips from others — primarily through the Hearing Loss Association of America. I’ve been president of the New York City Chapter of HLAA (with a short break) for 7 years. I served on the national board of HLAA for 6 years. Those years — and my board colleagues — taught me how to live with hearing loss.

These days I hardly ever think about the mysterious origin of my condition. I still get frustrated with my hearing, but I no longer obsess about the cause. Hearing loss is part of who I am.

That, by the way, is why we say a person “has hearing loss” instead of “is hearing impaired.” “Having hearing loss” is one facet of your identity, part of who you are. Being “hearing impaired” puts the impairment front and center in defining who you are. You are your disability. This person-centered phrasing is correct for any disability. Person first, disability as one of many aspects of your identity.

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For more about living with hearing loss, read my books: “Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.” and And “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook or paperback, on Amazon.com.

9 thoughts on “Do You Know What Caused Your Hearing Loss?

  1. When I was four years old I started having ear infections one or more times each winter. An ENT started placing radium rods in my nose for about 5 minutes in repeated sessions when I was six. One time the doctor told the nurse to come in with him. He said he had to do something else, and would she take the rods out when the timer range. Both he and she left. The timer went off and I was going to take the rods out, but then I was reminded of my mother’s insistence that I not do such things without an adult present. Eventually the nurse walked by and spotted me and was reminded that she was supposed to take the rods out. My hearing loss was mild for many years. No hearing aids were recommended (1950s). I had my first vertigo attach of Ménière’s disease when I was 21. First hearing aids started when I was 37. There was a precipitous decline in my hearing in the decade of the 1980s. I could no longer comprehend music. I wore power hearing aids until 2013 when I qualified for Cochlear Implants bilaterally. Amazingly I could hear music again 6 weeks after my processor was turned on.

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  2. Thanks Katherine
    You make a good point that hearing loss is one thing about you, and not an over arching description of who you are.

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  3. In 2003 I caught what I thought was a cold that lasted for a month. When I was over the cold, I had a ringing in my left ear that just wouldn’t go away. An ENT said I had a little fluid in the ear and sent me for tests and I was diagnosed with Tinnitus brought on by the cold the doctor said was probably a viral infection! Over the next 4-5 years I adjusted to the constant ringing in my ear but never noticed I was losing my hearing until family and friends started pointing it out to me. An audiologist confirmed my need for hearing aids but because of the expense, I decided to purchase a pair through my insurance company at the time. You get what you pay for because after a while they were so ineffective, I eventually stopped wearing them and OMG, I was purchasing batteries by the box! Fast forward to the Pandemic and keeping up with the news on TV, one day I realized I had it turned up to 100 and was still having trouble hearing! I purchased a couple of amplifiers and after a while, they didn’t help. Then one morning I woke up and realized my husband was talking to me and I couldn’t understand a word he was saying! Pandemic of not, I found an audiologist who, with the latest blue tooth technology, examined and tested me thoroughly and fitted me with new and very expensive hearing aids! Because one of my ears is shaped different, she suggested I wear them with a mold especially after I told her the old hearing aids would fall out of my ear! Through all of this no one ever gave me a name for my hearing loss. I am so grateful to be “hearing” again. It’s not perfect but I can hear. My only fear now is waking up again one morning and not being able to hear. I live next to a busy express way, and I constantly hear noise all day from the cars and trucks coming through. Some days it’s so loud I actually take the hearing aids off! I am also grateful I discovered your wonderful Facebook page. I have learned so much about hearing loss from your articles and have even joined an online group of people like myself. We all have hearing loss and I love them all! Thank you!

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    • Thank you for your story Jane. It sounds like things are okay now but what an ordeal!
      When I was losing my hearing at an alarming rate my ENT told me I’d never be deaf. I took that to mean I’d never lose all my hearing. I have lost most of it — but I’m not deaf thanks to much better hearing-aid technology and to cochlear implants. I have one c.i. now but expect to get a second eventually. If you’d like to attend our NYC HLAA chapter meetings, take a look at our website: hearinglossnyc.org. All meetings are on Zoom, captioned, and open to all.

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  4. Katherine – My hearing loss was noticeable to me when I developed tinnitus after the birth of my first child in 2001. While in the labor and delivery recovery room, I held my baby and listened to crickets chirping in the ears. When I got home, I couldn’t hear the phone or the doorbell ring, and my son’s high-pitched cries from upstairs were not audible. Two months later, I was diagnosed with progressive sensorineural hearing loss. I was 27 years old. The audiologist said that I likely had lived with the hearing loss for some time, and it had gone undiagnosed.

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