What To Do When Nobody Can See Your Hearing Loss Struggle

I am proud to share my hearing loss story and tips on Mango Health

Any disability can be challenging in daily life, but one that is invisible creates additional obstacles. Being invisible can make it harder for people to be aware of your disability, to provide assistance without being asked, or even, in some cases, to take it seriously. Hearing health advocate Shari Eberts shares five suggestions that can help make your struggle more visible to improve your quality of life.

“But, you don’t look like you have a hearing problem,” the gentleman said to me, from across the aisle. I had asked if he would mind switching seats with me in a crowded auditorium, so I could have a better view of the speaker. Given my hearing loss, I always do better if I can see the presenter’s mouth so I can lipread to fill in the things I miss by listening.

I stared at him in surprise. Did he expect my ears to be flashing red to indicate a problem? Or maybe they would have out of order signs hanging from them? Didn’t he realize that someone can’t look deaf?

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20 thoughts on “What To Do When Nobody Can See Your Hearing Loss Struggle

  1. These are all good tips. The larger lesson perhaps we’ve learned (if not others) is to not judge peoples’ situation! Never assume until you have all the information.

  2. Way to go, Shari!
    I actually wear a button, that says, “I can hear you better, if you FACE me”.
    It gets people’s attention and raises awareness..gets the conversation started.

  3. And, I’m very HOH.
    I’ve been HOH for over 30 years.
    My family members still don’t “get it,” in terms of facing me when they talk to me, not yelling at me, but speaking more slowly, etc. Sad, but true.
    Wearing the button really helps.
    You can find it on PINTEREST…it was created by an audiologist in England.

  4. The worst culprits are doctors, believe it or not. You tell them you are profoundly HOH, and they still talk to you with their face facing the computer or those Tablet things they all use now. Frustrating…..

  5. I wear 2 behind the ear style aids with ear moulds. I also have close cropped hair so my aids are very visible.

    This means people seeing them might guess I don’t hear well, at least you’d think they would.

    I get a problem with people who I put into two different groups.

    The first group is made up of those people who on noticing that I wear hearing aids automatically assume that I’m stone deaf and think that they can help by shouting.

    Hmmm, like that works!

    The second group are those people who may notice my hearing aids and assume that they are a cure for my hearing loss and just speak without looking at me.

    Yea, right! Might help if I can see your face to help fill inn the blanks by lip reading and seeing facial expressions.

  6. For that Case i have decided to shifted to CIC ITC to BTE . that is very good solution so far i have experience better responses . Dont feel shy of them i feel better and more stronger.

  7. This issue has become something I’ve become more and more assertive about as I’ve gone along. People just can’t imagine it. They say how well I do, with no concept of how much effort it takes me to be part of a conversation in many settings.

    Very often, I get the reply, ‘oh, I’ve got hearing loss too.’ These are people who manage without hearing aids but have begun to notice that they don’t hear as well as they used to, and so have no concept about the experience of someone with serious hearing loss.

    Most recently, when I have gotten a reply like this and have the opportunity to explain more fully, I really get clear. I talk about the word section of my hearing test, where I have no context and hear vowels but not many consonants. It’s a guessing game, I say. I hear ‘ooze’ and say ‘choose, lose, cruise, zoos, booze–well, booze wouldn’t be in a hearing test, so my audiologist laughs with me.’ So, I explain, in conversation, my brain is constantly figuring out what I am hearing, depending on context and lipreading to make the choice as immediate as possible. It can be exhausting, I say. This example actually seems to get people thinking concretely about my issue and helps them understand that they really don’t know what they’re talking about.

    This spring we went to France, where we lived in the mid-90s. My hearing was much better when we lived there but I already wore hearing aids and struggled. Now, I do occasionally express myself in French but I have little patience for listening to it. It is a very difficult language to hear with my loss. Everybody I know there speaks English, and I began to simply tune out of conversations. Near the end of our time there, I told my husband–who speaks French well– that I don’t want to come back. It’s too hard, said, to be at a table so much and left out of the conversation. He began to ask people to summarize in English for me, to help me out with my hearing. To one friend who hates speaking English, I said privately to him how isolating it was for me, given my hearing loss, to enjoy being with people speaking French. He told me he has a hearing loss too, so understands. Of course, he doesn’t need hearing aids. So I told about the ‘choose, lose, cruise, zoos’ guessing game that is my life. “I just don’t have the vocabulary in French to do that in real time,” I said, saying that I am giving up. He immediately began speaking English with me.

    So I have learned to speak up, and to take the time to really explain when I need to. It’s a necessary education for people who spend a lot of time around me, and worth the effort.

  8. Self advocacy around any disability can be a healthy, pro-active pursuit, it can also be boorish and defining. I’m betting most of us with a hearing loss would prefer not to have it……..8 years ago, I lost my lower left leg via a ruptured aneurysm. I function well with a prosthetic leg these days and have not looked back. Indeed, when I wear slacks most folks don’t notice. For me, it’s simply an annoyance not a disability, but it could be. Same way with my hearing loss, it could be a disability, or is could be simply an annoyance. Which is it? If I told the truth, many times I will hear ½ of what someone has said or misunderstand the other 1/2 …….

    With warmer weather, I prefer wearing shorts, which means anyone who’d care to notice can’t miss my fancy titanium leg. Over the years, I’ve gotten used to stares, “look aways” and other social “rejections”. Many times, I’ve been praised by random folks who compliment my “courage” or success in being able to walk. Never once have I ever been complimented on using my hearing aids successfully…..

    We humans thrive on acceptance and success. Indeed, our outlooks and attitudes depend upon it. A thought…….as we are self advocating and trying hard to hear in a “normal hearing” world, wouldn’t it be nice to have someone say, “Wow, you are a hearing rock star!”

    So, I say to you Shari, “You are a hearing rock star…..!” Thanks and Carry On…

  9. I have attended a monthly Legion meeting for over 4 years now. No matter how many times I ask if they could speak abit louder it doesn’t happen. I really love the things we do but I feel like an outsider. What can I do? I’m getting embarrassed to keep asking what’s happening.

    • That is frustrating. One suggestion would be to get an assistive listening device like a Roger pen or FM system which the speakers could use as a “microphone” that connects right to your hearing aids. These can be costly, however. Does anyone else have suggestions?

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