Hiding Your Hearing Loss? Not Worth It

New York’s second annual Disability Pride Parade on July 10 included representatives of various national hearing loss associations. They marched because hearing loss is a disability, but more importantly, because hearing loss is a hidden disability. We can never remind people too often that people with hearing loss need accommodations as much as someone in a wheelchair.

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HLAA-NYC member Ruth Bernstein at the Disability Pride Parade, with an HLAA umbrella.

 

Like most hidden disabilities, hearing loss comes with baggage that contributes to people’s reluctance to be open about the condition. Historically, hearing loss has been considered a sign of old age, impairment and declining mental capacities. Those with mental conditions, even when those conditions are controlled with medication, face similar worries about revealing their hidden health issues.

But this secrecy can have a deleterious effect on professional and personal relationships, affecting job performance and mental and physical health. I wrote about this in 2013 in a New York Times article headlined, “Quandary of Hidden Disabilities: Conceal or Reveal.”

Keeping a secret like this, living every day pretending you’re something you’re not, is debilitating. It undermines your confidence. You wonder if the disability is affecting your job performance and, if it is, if you’re the only one who doesn’t know it. You worry your employer or your colleagues will find out and you’ll lose your job. Firing someone for a disability is forbidden by the Americans with Disabilities Act, but employers find ways around it.

There is also the stress of having a condition that may get worse. With hearing loss, the progression is often unpredictable. I first lost my hearing in one ear when I was 30. I never dreamed that by the age of 60 I’d be profoundly deaf in that ear and close to it in the other. Because the cause of my hearing loss is undiagnosed, I also live with the worry that it may be a symptom of an as-yet-undiagnosed larger medical condition.

Those with disabilities bear the responsibility to speak out, but others should be sensitive to the fact that they may not feel confident enough to do so.

There are ways professionals can avoid inadvertently discriminating against people with hidden disabilities. Medical professionals need to recognize that complaints about depression and anxiety, as well as memory loss, may reflect an underlying, unacknowledged hearing loss.  Psychotherapists need to recognize the symptoms of a hidden disability with new patients, draw them out about it, and then confront the issues that the disability contributes to.

Finally, those who work with the elderly have a special responsibility to recognize hearing loss. Fully 50 to 80 percent of their clients will have hearing loss. It’s easy to mistake unrecognized — or even acknowledged — hearing loss for cognitive decline or even dementia.

 

This post first appeared on AARP Health on June 27, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

11 thoughts on “Hiding Your Hearing Loss? Not Worth It

  1. Thank you for advocating. You’ve inspired me and now I also am an advocate and chapter leader in HLAA. I though I was the lone voice in the wilderness until I started being much more vocal about hearing loss. That was a wrong assumption – I now have people coming at me from all walks of life wanting to talk about their hearing loss or that of a loved one. At least now we have some support and I frequently refer them to your books which helped me tremendously. I’m determined that this will no longer be my hidden disability or that of my husband.

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  2. Thank You for a very wonderful article. I do want to tell you about what I saw on TV a couple nights ago. The RNC Convention is rolling along and a shot of President Clinton shows him with a finger in his right ear, like making an adjustment. I am shocked at this “is that a hearing aid in there?” Google tells me that he has aids in both ears and has had them since 1997. Can you imagine what our hearing world would be if he was public on this matter? Holds true for Ronnie also. Thank you for your work, it is very inspiring to me.

    I have a CI and a big over the ear device. Do not wear a hat, and get stopped frequently asking abut the CI etc.

    Sincerely, Fred McClory Co Founder and CEO Ears4Me.orge

    ________________________________

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  3. Thank you Katherine. This is a must read for everyone.

    I am a recent implantee, and was activated June 9. I have little hair so my rig is “out there”. When I see friends for the first time post activation they say something like, “Hey – how is that thing working?”

    I was told early in the process that this was not a temporary fix but a life-long commitment. It has, in other words, become part of who I am. In the beginning, almost 20 years ago, I was fitted with completely in the canal (CiC) instruments which I was able to wear for about 10 years. People would be surprised to find out that without those tiny units, I could not have a successful conversation.

    I now know that playing it cool and sneaking in unnoticed did little to support the HOH community or help me to realize who I really was. Regardless of one’s disability, self acceptance is the beginning of growth and health. Still, i have to wonder – if i had your lovely hair, would I let it be known that I was wearing a bionic ear?

    I hope so. Thanks.

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  4. Hi Jerry, I did try to hide my hearing loss for a long time, so I speak from experience.
    But now it’s totally visible and the cochlear implant even more so. I decorated my implant with Skin-It — You order it on line, A colorful, removable sticky decal.
    Might decorate my hearing aid too if I can find the right size.
    Thanks for writing.

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  5. RE. “Hiding Your Hearing Loss is Not Worth It”, I have to admit that I am still hiding my hearing loss, because it doesn’t seem to make much difference even if I am upfront about it. I started a new job and I was recently introduced in a huge staff meeting. I was asked to talk about my background, what my new job is, and a little about myself. I decided this staff who didn’t know a thing about me, needed to know about my hearing disability. So I did come out with it and laughed about being their token “disabled” staff person. I explained that if they called my name and I didn’t respond, I was not being rude, I simply did not hear them. I mentioned that talking directly to my face was the best means of successful communication. Much as I have tried to be upfront about it, no one remembers except those I work directly with me. I’ll say, “Oh sorry, did you call my name”? When they answer “yes”, I apologize and remind them that I can’t hear. It seems like I am always apologizing. That’s something else we need to stop doing, besides hiding our disability. But I very often feel like I can be a nuisance, constantly asking people to repeat themselves. Sometimes we are the brunt of laughs because we can’t hear. I can make them aware of my hearing loss and make them repeat a sentence, come closer so I can hear them without ambient noise, etc.. but soon thereafter they forget. The laughter isn’t meant in a demeaning way, it just seems comical to people when we think they said “art” and they said “start”. I am not sneaking around, but even when I’m not hiding my disability, as you have said, if they don’t see a wheelchair or a white cane, they don’t think we are disabled. Admittedly, we all need to do a better job of defending our disability and educating people through disclosure.

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    • Your experience is so familiar! I’ve gotten to tthe point where I figure it’s their problem not mine. People really do not listen, and so you have to tell them again and again. With hearing loss, that’s even more true because you don’t look like you can’t hear, so they forget.

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  6. Let people you work with know you have a hearing loss. Just a few will think there is something wrong with you but most will be helpful. The employees who thought my hearing loss had something to do with my intelligence became surprised when I became their supervisor. In the working world you need to become the most productive and knowledgeable employee in your job description.

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  7. Thank you so much for your article. I lost my “good” ear to a brain tumor called a vestibular schwannoma. My left ear hearing was never well. It effects my balance and have tinnitus, and many other conditions. If you have these symptoms and dizziness if it seems to be affecting both ears you might want to look up NF-2. My hearing will not get better. I can’t hear anyone on the right side, and it’s scary walking by your self and someone comes up all of a sudden. This happened to me at 37. I appreciate articles like yours to make people more aware how detrimental it can be. Thank you!

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    • That sounds very difficult. I’ve had intermittent vertigo and occasional dizziness. Both are horrible to deal with. There’s a good website called mvertigo.com. It’s mostly for people with Migraine Associated Vertigo but it’s interesting to read some of the discussions and tips.

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