Living with hearing loss is like solving a mystery

Prior to hearing aids, my wife often silently assumed I was just not listening to her, or that I had “selective hearing.” Sometimes, if I said “I can’t hear you,” she would reply “well I can hear you.” She assumed that if she could hear me then I should be able to hear her.
The first audiologist I went to had an interesting demonstration. He placed a speaker on his desk, and started playing some audio from his computer. A female voice giving some sort of dry technical lecture. He asked me if I could understand what was being said. I asked him if the lecturer was speaking english. He replied that she was, and I told him I could not understand it.
He then asked my wife if she could understand what was being said, and she said she could.
Then he made a few keystrokes on the computer. He turned to my wife and said “now this is what your husband is hearing.” She almost burst into tears.
Now you have to understand, my wife is an absolute angel and I know she loves me dearly. But sometimes people just don’t understand. There are plenty of things about her that I don’t understand. It’s difficult to understand that which we haven’t experienced.
We need some sort of app where we could perform this same demonstration with our friends.
Of course, you could always carry around a set of earplugs. Ask someone to put them in and then have a conversation. Maybe not as powerful a demonstration but it might help some people get it.

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Well it’s not their problem and it’s not something they have to deal with everyday. But it’s the rudeness that I don’t understand. I once saw a blind man on a subway platform. It was obvious that he was blind. And people were banging into him and spinning him around and basically just pushing him out of the way. He was well dressed not that it mattered. I helped him. But damn there are a lot of rude inconsiderate people out there.

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People are not raised anymore like my generation we were raised to take care of the elderly and anyone else that needed help. We have too much of a me group of people now, if it is not in their favor then they could give a damn about anyone else.

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Thank you for volunteering at the VA clinic and Thank you for your service!

You were spot on with other folks not understanding what it is like. Well said.

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Sometimes it’s more the audiologist or dispenser fitting the HA than the brand of HA. Certainly the HA needs to be appropriate for your level of hearing loss, however it took over a year and going to 5 different audiologists before suddenly I could hear quite well after sudden hearing loss left me unable to hear a person speaking right in front of me. Sometimes I could hear slight, very slight sound when their lips moved. No words.

I was so very fortunate to have a patient husband who was determined we could find at least some success eventually, and also 2 preschooler granddaughters who immediately volunteered they were learning some ASL at their preschool and would teach me.

After much time spent we did get the original audiologist to agree to use lucite molds (very allergic to silicone molds) and I could hear voices well, hear birds in the trees, bicyclists going past in the street. I am so very fortunate, I’ll admit. This same audiologist can’t fix for patients what isn’t left to be fixed. She worked in an office with a Dr who was a specialist in our state. They did many cochlear implants, for instance.

I wore that same pair of HA for 14 years, until last fall because my audiologist and Dr were retired. No one could be found to fit new aids to help me at all. Now finally I’m hearing well once more with new HA. My ancient HA were beginning to fail. At least my hearing loss hasn’t changed much at all. I do realize how very fortunate I am, cherish sounds and voices every day. Music is a big part of my life.

It is exhausting to be social when one can not hear. Few hearing people even try to understand this or do their best to accommodate and include. Finding the right position for employment is a major hurdle.

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I am 46, and my audiogram is normal up to 1k and goes down from there.

I have noticed that I pace and articulate my speech much more now than I did before my hearing loss. I think this is because it’s how my brain expects proper speech to sound: clearly paced and articulated.

What is difficult is that many people’s speech is not clearly paced and articulated, which is borderline mumbling and lazy. But THEIR brain hears it just fine, and so they have no need to further clean up their speech.

The frustrating part with some people (especially with my teenagers) is, when I say ‘what?’, they just repeat themselves, with the same volume and mumbling style. It doesn’t matter if I explain that I need to hear speech that is clearly paced and articulated.

Some people just don’t get it.

I only say ‘what?’ once. Beyond that, it’s not worth it. If someone doesn’t want to help me hear them, then I will join them in the laziness and not listen.

My mother in law is the most difficult. Her late husband (best guy ever) had hearing loss. But she talks constantly and never clearly. Five years ago, when my wife (who’s had profound loss since childhood) told her mother that I was diagnosed with hearing loss, her mother quickly quipped at me, “Don’t ever tell people they mumble!”.

Well guess what? Some people do mumble! And some people will never change.

Fast forward five years. I have been telling my son that he mumbles (he is extremely lazy AND stubborn). Now that I have just started wearing hearing aids, I can hear that upper range very clearly again. And so I tell him, “you DO mumble, and I KNOW YOU DO, because I can hear you!”

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I know me asking people to repeat themselves is annoying, but I think it helps that they know I’ve done everything I can to hear the best I can by getting hearing aids and having them adjusted properly. Criticizing people seldom helps. Telling them that you’d really like to understand them and it would help if they could slow their speech and over enunciate might work better than telling them that they mumble.

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I don’t know if that criticism was directed at me, but I do not tell people they mumble. At times I tell my teenagers they mumble, but that’s a different story, because it’s my job to raise my kids to not be lazy. As for other people, I tell them I have hearing loss, and I leave it up to them to help with that.

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Wasn’t intended as a criticism. Just an observation I’ve made in life.

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I wish folks would quit saying that glasses fix eyesight problems!! As someone with BOTH hearing and eyesight issues - - neither one is a simple fix when you are in your 70’s!! And I have the same problems of people not understanding that I cannot go out in the evening unless someone ELSE can drive because I cannot see well at night - - as I do when I have to ask someone to repeat something said.
Many simple eye issues like being near or far sighted can be helped greatly by glasses, but just because someone is wearing glasses does NOT mean they can see perfectly any more that wearing my hearing aids makes me able to hear perfectly.
Most of same issues about not understanding apply to vision as well as hearing!!

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I agree with everything you wrote 100% I only wish my Family would understand.

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Copy and paste it in a letter and share it with them, and explain that this is what you are going through too.

This as had 38 shares on Facebook.

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Awesome response—wearing your hearing loss as a badge of honor. We need to directly attack the prejudice that affects those with hearing loss–and many of those are are war heroes. No other physical disability faces this kind of discrimination.

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This is a revealing title. In a practical sense it shows the significant understanding gap between the hearing aid providers and their customers. How to function with hearing loss in a worlds that takes hearing for granted is the challenge and HA providers (audis AND mfgrs) would benefit from a closer relationship with users in advancing both the HA technologies and what I call coping strategies - ways to minimize problems with hearing loss.

I have profound hearing loss as you can see from my profile, and my wife is very soft spoken. That’s the worst case combination, yet I have figured out how to maintain a normal relationship even with difficulties from time to time. We have developed several practices that help. They all have one thing in common - ELIMINATION OF BACKGROUND NOISE.

This is where the mystery comes in and where providers can and need to do more to help. Competition of secondary noise (music, crowds, road noise, wind) has a profound effect on understanding. Its never that I can’t hear someone, but rather I can’t understand them with all the competing sounds. Why people with normal hearing can do this is a mystery to me, but it suggests there is more to hearing loss than just loss of hearing hair cells.

All the HAs I have tried do poorly in a noisy environment. In fact I do better without them in these situations. All amplify the white noise too much making a difficult hearing situation worse. My experience when driving illustrates best this point.

I have Widex Beyond aids and bought their streamer and lapel mic. My wife will wear the mic when we are in the car and I will put on a Bose sound neutralizing headset. I turn off the HA mics to minimize amplifying even the small noise that comes through the headset foam. Her speech is transmitted via Bluetooth direct to my aids through the streamer. Doing this makes an otherwise impossible situation as easy to understand as a quiet room.

I think HA providers don’t stress this need enough and suggest similar ways to improve conversation. Their products AND advice need to get better.

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I have ITE Oticon OPN1 aids, my aids are set for max noise reduction and max speech recognition. The problem I have with this is the fact it kills so much of the sounds of nature I would love to hear. But I can either have speech understanding or I can have nature sounds. Yes I could have my Audi add more programs, but I would forget to manually change programs and end up saying something I shouldn’t when I came in from my hikes in the woods around here.

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My take is that for a loss like yours, no hearing aid is ever going to be satisfactory. If you want something “better,” it’s called a cochlear implant.

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I disagree. a CI is a permanent irreversible change and the nature of the sound is SIGNIFICANTLY different from what I hear. There is a website that simulates what to expect with a CI and depending on the number of channels and the quality of the implantation. It a profound change that takes a very long time to adapt to.

I have read nothing to suggest that a CI will dramatically improve your hearing in a noisy environment. I have attended a CI support group and witnessed this first hand.

The group consisted of 2 types of users - those deaf at a young age and those with hearing loss later in life. Even without asking you could tell which was which. The deaf cohort had noticeable different speech. They also had 2 CIs.

Those who had CI after profound hearing loss had normal speech. They also had only one CI. Most had someone with them who had normal hearing. To my surprise many had to ask their support person to repeat something they didn’t understand. When I asked someone who had only one CI why they didn’t have 2 they said they didn’t want to lose the rest of their natural hearing!

For those who were born deaf, this is a godsend. For the rest, I think the jury is still out.

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We all have to make our own decisions. There have been several success stories on the forum with cochlear implants. All I’m saying is that I don’t think you’re going to see significant improvements from advances in hearing aids for a loss like yours.

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I live in a retirement community, and a lot of us have hearing aids, and there are others that do have CIs that got them after having their hearing go from normal to profound, non of them have regrets for getting the implants.

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Chuck, I haven’t heard crickets, doves or owls in decades. I am happy to be able to hear music and can avoid situations where I need to have very good comprehension of speech (lectures, conference calls, meetings).

I actually hear better in many situations without my aids and now have limited their use to those situations where I really need them. It is not about getting use them. I have worn them religiously for months as a test and when asking those I am close to to assess differences in communicating with me, the conclusion was always the same - no different.