What do you do when someone is in denial about their hearing loss?

Posted by mari @mari, Jan 16, 2020

I was reading on here about BFF and mates Refusing to get tested when their hearing is really bad – their frustration. Where are those posts?

@julieo4

Just jumping back in to Mayo Clinic Connect as I've not received any posts for over a month. Not sure why. Just wanted to point that out before commenting.

A big issue we who have hearing loss deal with is negative stigma. Why is there such negative stigma related to hearing loss? It runs pretty deep, but is partly because attitudes about hearing loss and deafness have evolved over generations that often categorized hearing loss as an affliction of the old and feeble minded, or of the dumb. Dumb meaning not quite with it or stupid. Many of us grew up hearing the term 'Deaf and dumb', which is a very negative statement. OK. It sounds like something from the dark ages now, but it was very common not all that long ago. Today, we have manufacturers and sellers of hearing aids marketing the kind of denial that furthers that sort of language. Have you ever seen an advertisement for a hearing aid that doesn't tell you how small it is? How no one will know you're wearing it? Etc.?? Isn't it time to start advertising the benefits without all that negativity? Marketing denial just furthers the stigmas that prevent so many from admitting they have trouble hearing, much less getting help for it.

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@julieo4
Hi,

Everything you said about the stigma of wearing hearing aids is so true and I also blame the manufacturers for the “invisibility “ aspect of marketing which only reinforces and perpetuates the stigma. They haven’t gotten the message yet to stop that type of advertising.

I think a lot of the stigma has to do with the fact that hearing loss is not understood by the majority of people and that hearing loss affects not just the person with the loss but also affects family and friends and employers. This is so unlike wearing glasses to correct vision which just affects the person wearing them. We are a youth oriented society and people who need to wear aids or implants may perceive themselves differently especially if they are being treated differently by family, friends and associates. Vanity comes into play which is a normal reaction. Age bias affects older people.

It’s up to us to educate people but not everyone is comfortable doing so or don’t know how to go about explaining to others.
Hopefully the younger generation who wear aids or implants (and there are more of them than ever) will help to erase the stigma in the years to come.

By the way, American Girl, the doll maker, has come out with a doll that was born with congenital hearing loss and wears a hearing aid. The problem I have with their advertising is that they are marketing her as the first doll with a disability. I’m familiar with these beautiful dolls because my granddaughter had them when she was younger.

Regards from FL Mary

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Now that I am in FL – I will add to this same stream. I am VERY busy with educating this population about hearing loss. I thought I could retire and enjoy my life down here once I moved here 10 months ago but that was not the case. We live in one of the 11 Del Webb Elderly communities called Sun City Centers where you qualify to live if you are 55 and older. Almost everyone here has some degree of hearing loss and almost everyone denies it in one form or another. It is astounding.
We have a HLAA Chapter here and very few of the 44,000 people attend the meetings. Only those who are in trouble will come out of curiosity to find answers to their questions about their instruments and hearing loss. Questions about spouses not paying attention or helping with their hearing loss or even acknowledging the loss playing in the anguish that seems to permeate the couples and individuals around this non-incorporated township.
I am learning as I become involved and am a member of the Chamber of Commerce, the Ambassador program and work with the Mens Club, various other Clubs in SCC as well as the HOA where we live. I represent HLAA and constantly speak about it and hand out promo for the chapter and my business card. It is facinating that I don't need to say much anywhere and I received stories from everyone I meet.
I have begun to have speaking engagements now for groups wondering who we are and what they need to do to help them hear well. I have a PP and handouts for our Chapter. Dr Juliette Sterkens is here today to speak about hearing loss, hearing aids and Hearing Loops. We have only 15 loops in SCC but I have said we need more.
Our long term goal in SCC for construction since we are almost 50 years old is to build more building and because I have spoken up about being the most looped town in America, they have included looping in all of the new buildings for the future.
Speaking up – stepping up to the plate makes a difference. Listening and validating what they are saying also makes a difference. We also have a large population of Veterans. I will be addressing them as well after introducing them to the First Free Year with joining our HLAA organization. I will be speaking to them on the horizon.
Funding has been coming out of my own pocketbook but as the value has begun to be shown to the community – they are seeing the benefit and beginning to offer stipends and sponsorships to our Chapter that will help us in the long run. I have a group of people who have been helping me along the way as they also learn about what HLAA can do for them as well as for our community.
Its exciting and interesting to see what this community can do…but it will be a slow process. One step at a time. That's all for now.
BTW…the doll is a great start – we should encourage other manufacturers to offer all of the disabilities as well. ANYTHING is better than nothing.
Eloise in Sun City Center, FL

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@nurseheadakes Eloise, what you are doing is awesome to bring education on hearing loss to so many in your community. I commend you. Re: veterans, don't forget to mention to them that there is a virtual Veteran Chapter that meets via Zoom and is overseen by Carla, the National HLAA Chapter Coordinator. I don't know how often they 'meet' but info might be on the HLAA website.

Mike, HLAA Chester County PA

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@nurseheadakes

Now that I am in FL – I will add to this same stream. I am VERY busy with educating this population about hearing loss. I thought I could retire and enjoy my life down here once I moved here 10 months ago but that was not the case. We live in one of the 11 Del Webb Elderly communities called Sun City Centers where you qualify to live if you are 55 and older. Almost everyone here has some degree of hearing loss and almost everyone denies it in one form or another. It is astounding.
We have a HLAA Chapter here and very few of the 44,000 people attend the meetings. Only those who are in trouble will come out of curiosity to find answers to their questions about their instruments and hearing loss. Questions about spouses not paying attention or helping with their hearing loss or even acknowledging the loss playing in the anguish that seems to permeate the couples and individuals around this non-incorporated township.
I am learning as I become involved and am a member of the Chamber of Commerce, the Ambassador program and work with the Mens Club, various other Clubs in SCC as well as the HOA where we live. I represent HLAA and constantly speak about it and hand out promo for the chapter and my business card. It is facinating that I don't need to say much anywhere and I received stories from everyone I meet.
I have begun to have speaking engagements now for groups wondering who we are and what they need to do to help them hear well. I have a PP and handouts for our Chapter. Dr Juliette Sterkens is here today to speak about hearing loss, hearing aids and Hearing Loops. We have only 15 loops in SCC but I have said we need more.
Our long term goal in SCC for construction since we are almost 50 years old is to build more building and because I have spoken up about being the most looped town in America, they have included looping in all of the new buildings for the future.
Speaking up – stepping up to the plate makes a difference. Listening and validating what they are saying also makes a difference. We also have a large population of Veterans. I will be addressing them as well after introducing them to the First Free Year with joining our HLAA organization. I will be speaking to them on the horizon.
Funding has been coming out of my own pocketbook but as the value has begun to be shown to the community – they are seeing the benefit and beginning to offer stipends and sponsorships to our Chapter that will help us in the long run. I have a group of people who have been helping me along the way as they also learn about what HLAA can do for them as well as for our community.
Its exciting and interesting to see what this community can do…but it will be a slow process. One step at a time. That's all for now.
BTW…the doll is a great start – we should encourage other manufacturers to offer all of the disabilities as well. ANYTHING is better than nothing.
Eloise in Sun City Center, FL

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@nurseheadakes
Hi,

Welcome to Florida. The area I live in seems to have a lot of the elderly and older population although I don’t live in a senior community. I know so many people my age who have hearing loss and no aids. Kudos to you for spreading the word. I do the same thing wherever I go. The people that pay more attention to me seem to be the younger generation because of their parents or grandparents and they are more interested in learning about hearing loss. “ I had no idea” is a common refrain. Talk to the older people, like me lol, and it falls on deaf ears.

FL Mary

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@91retiree

Have had H Aids for 2 years. Very unhappy with them. Extraneous noise makes conversation extremely difficult. One on one is fine. Don't expect too much.

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Does your hearing aid have a volume control? Mine certainly does.. .. or a setting for when you are in a crowd… My Starkey Bluetooth Rechargeable HA with a remote microphone (from the Veterans Administration …so I did not pay for them when they were issued…. I do not know the price)… But with the remote microphone setting I can give the mic to my partner and she can clip that on to her top and talk … even if she is in another room… and I can hear her above the others… ..but yes in crowds I often take my HA out … shut them off… and sit closer.. All beneficial ..

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@ken82

Does your hearing aid have a volume control? Mine certainly does.. .. or a setting for when you are in a crowd… My Starkey Bluetooth Rechargeable HA with a remote microphone (from the Veterans Administration …so I did not pay for them when they were issued…. I do not know the price)… But with the remote microphone setting I can give the mic to my partner and she can clip that on to her top and talk … even if she is in another room… and I can hear her above the others… ..but yes in crowds I often take my HA out … shut them off… and sit closer.. All beneficial ..

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In response to the posts about the "stigma" of wearing aids: First, think back to what people had to wear during the 40s and 50s: my dad was profoundly deaf and wore a 1"x3"x4" aid in a harness in the center of his chest before the "radical" new aids in clunky eyeglass bows came into being. We learned to speak to his chest! Not only did he have a huge lump on his chest, but a very visible cord coming out of his collar up to the one ear that the aid worked with. Everyone in the room could hear the frequent feedback squeals, too! He had to be careful…couldn't wear the popular nylon dress shirts of the day as they rubbed against the aid enough to make it impossible for him to hear at all.

Also, I was terribly near-sighted all my life, almost legally blind, until I had cataract surgery. Being visually impaired to that extent is also very isolating and a problem, especially after Meniere's removed useful hearing from one side during my 40s. Near blindness is also a social problem as well as a problem seeing what's around you. Following cataract surgery, I initially had, believe it or not, 20/20 vision. It has deteriorated slightly, but I'm still legal to drive without glasses. Every morning, I wake up, look out my window and see leaves on trees and am soooo grateful! I still wear glasses all day, because the astigmatism resulting from severe near-sightedness (i.e., my eyeballs are misshapen because I didn't spend the additional $2,000 per eye to have that corrected) makes walking without glasses lead to having a full-blown Meniere's crisis, which, although it's a great way to lose weight, is not anything I want to experience again. And, of course, I also have presbyopia, because I'm older than dirt, so need glasses to read or do close work.

Due to having gone bilateral with Meniere's last May 24, I've found it virtually impossible recently to understand, even though I can hear sound with the aid in what used to be my hearing ear. Meniere's adds recruitment (sharp sounds actually are painful) and distortion (you can hear that someone's speaking, but it's just a rumble of noise without any discernible words), plus it fluctuates from hour to hour. Some days I can hear at least every other word spoken and piece together what I see and hear, but most of the time I cannot understand, even when attempting to "get" what the person right in front of me is saying. This makes is additionally difficult, as people can't understand why I heard them enough to get at least the main points yesterday but can't get a clue today. I've worn an aid in my "good" ear for a couple of years as age-related deafness made it increasingly difficult to hear, but now I've had lots of days where wearing it only increases the godawful bad noise…on top of different tinnitus in both ears.

I made an appt. with my gal at Costco, had to wait three weeks, but, WOW! Yesterday is the start of a new life for me! A quick test determined that I had lost, ahem, 20 decibels from a year ago. She gave me a temporary new, stronger mic in the new ear piece that still feels "too big" but does a better job of delivering sound. She has ordered a whole new earpiece and will call me as soon as it arrives–all at zero cost to me, even though it's MY problem, not the aid's problem. We talked about the possibility of a CI for my long-useless ear and how I would probably qualify for one now (failed to qualify six months ago by understanding 55% of simple sentences in a sound booth). On the hour-plus drive home, I was able to listen to a discussion program on the radio for the first time in months, plus, as I got closer to home and had to change stations, could actually hear and understand music for the first time in almost a year!!!! I hope that this will make it possible for me to actually hear during small group meetings as I'm active in three different organizations. EXCITING! I left with a provisional appt. for Sunday in case everything's too loud, but, several hours later, I'm one happy camper. The new earpiece may be too much for the rare good days, but I'll worry about that when when happens.

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@joyces

Hi,
Thanks for sharing and reminding us of the other possible reason for hearing loss stigma. I remember a friend with the shirt pocket hearing aid and a wire going up to the aid which he was always fiddling with. I forgot how large and uncomfortable looking some of the older devices looked. So glad your new mic is working out for you and hope it continues to do so. Maybe the new mic will “wake up” some of the dormant hair cells.

FL Mary

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@joyces

In response to the posts about the "stigma" of wearing aids: First, think back to what people had to wear during the 40s and 50s: my dad was profoundly deaf and wore a 1"x3"x4" aid in a harness in the center of his chest before the "radical" new aids in clunky eyeglass bows came into being. We learned to speak to his chest! Not only did he have a huge lump on his chest, but a very visible cord coming out of his collar up to the one ear that the aid worked with. Everyone in the room could hear the frequent feedback squeals, too! He had to be careful…couldn't wear the popular nylon dress shirts of the day as they rubbed against the aid enough to make it impossible for him to hear at all.

Also, I was terribly near-sighted all my life, almost legally blind, until I had cataract surgery. Being visually impaired to that extent is also very isolating and a problem, especially after Meniere's removed useful hearing from one side during my 40s. Near blindness is also a social problem as well as a problem seeing what's around you. Following cataract surgery, I initially had, believe it or not, 20/20 vision. It has deteriorated slightly, but I'm still legal to drive without glasses. Every morning, I wake up, look out my window and see leaves on trees and am soooo grateful! I still wear glasses all day, because the astigmatism resulting from severe near-sightedness (i.e., my eyeballs are misshapen because I didn't spend the additional $2,000 per eye to have that corrected) makes walking without glasses lead to having a full-blown Meniere's crisis, which, although it's a great way to lose weight, is not anything I want to experience again. And, of course, I also have presbyopia, because I'm older than dirt, so need glasses to read or do close work.

Due to having gone bilateral with Meniere's last May 24, I've found it virtually impossible recently to understand, even though I can hear sound with the aid in what used to be my hearing ear. Meniere's adds recruitment (sharp sounds actually are painful) and distortion (you can hear that someone's speaking, but it's just a rumble of noise without any discernible words), plus it fluctuates from hour to hour. Some days I can hear at least every other word spoken and piece together what I see and hear, but most of the time I cannot understand, even when attempting to "get" what the person right in front of me is saying. This makes is additionally difficult, as people can't understand why I heard them enough to get at least the main points yesterday but can't get a clue today. I've worn an aid in my "good" ear for a couple of years as age-related deafness made it increasingly difficult to hear, but now I've had lots of days where wearing it only increases the godawful bad noise…on top of different tinnitus in both ears.

I made an appt. with my gal at Costco, had to wait three weeks, but, WOW! Yesterday is the start of a new life for me! A quick test determined that I had lost, ahem, 20 decibels from a year ago. She gave me a temporary new, stronger mic in the new ear piece that still feels "too big" but does a better job of delivering sound. She has ordered a whole new earpiece and will call me as soon as it arrives–all at zero cost to me, even though it's MY problem, not the aid's problem. We talked about the possibility of a CI for my long-useless ear and how I would probably qualify for one now (failed to qualify six months ago by understanding 55% of simple sentences in a sound booth). On the hour-plus drive home, I was able to listen to a discussion program on the radio for the first time in months, plus, as I got closer to home and had to change stations, could actually hear and understand music for the first time in almost a year!!!! I hope that this will make it possible for me to actually hear during small group meetings as I'm active in three different organizations. EXCITING! I left with a provisional appt. for Sunday in case everything's too loud, but, several hours later, I'm one happy camper. The new earpiece may be too much for the rare good days, but I'll worry about that when when happens.

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Wow Joyce! You are truly an inspiration to those who have hearing difficulties!I think that individuals need to continue doing whatever it takes to make sure they try every possible means to keep hearing! Speaking of organizations I to belong to 3 different ones…two of them I am the secretary! I told both of these boards that my hearing comprehension was roughly 50% and that the minutes of the meetings would be 2 pages instead of 4 they all shrugged their shoulders and said that's fine!!!! Of course no one else wanted to do it! LOL! Have a nice day and keep up the effort!
Scott

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@scottk

Wow Joyce! You are truly an inspiration to those who have hearing difficulties!I think that individuals need to continue doing whatever it takes to make sure they try every possible means to keep hearing! Speaking of organizations I to belong to 3 different ones…two of them I am the secretary! I told both of these boards that my hearing comprehension was roughly 50% and that the minutes of the meetings would be 2 pages instead of 4 they all shrugged their shoulders and said that's fine!!!! Of course no one else wanted to do it! LOL! Have a nice day and keep up the effort!
Scott

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Scott: Love your response about being secretary for 2 organizations. Sounds to me like you're doing them a favor by keeping the minutes brief. I carefully avoid volunteering to keep minutes, but perhaps I should change my approach. Ann

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@lizzy102

She is not avoiding helping herself, it just looks that way. Let her know you love her and that you see how scary her world has become for her. She is afraid and the world isn't making sense anymore. I hope she is in a safe situation with loving caregivers who can take the time to coax her into taking the meds and using the HAs. You're such an amazing daughter, you care so deeply. Breathe through the hard moments, celebrate the decent moments and take good care of yourself.

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What a great response! I agree. Nobody can get bullied out of fear.

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I posted on Jan. 16, re BFF – The subject matter has shifted – yet the Subject on my emails from u – still say my same topic – I open mail. And no one is posting about BFF Reluctance/ refusal to get hearing test. Why can't SUBJECT LINE B CHANGED?

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@mari

I posted on Jan. 16, re BFF – The subject matter has shifted – yet the Subject on my emails from u – still say my same topic – I open mail. And no one is posting about BFF Reluctance/ refusal to get hearing test. Why can't SUBJECT LINE B CHANGED?

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Hi @mari, conversations have a way of meandering. How is your BFF doing? Have they decided to get tested in the meantime?

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