The Emotional Side of Hearing Loss

Posted by Julie, Volunteer Mentor @julieo4, Jun 13 10:50am

Often those of us who experience hearing loss, especially that of adult onset, feel that no one understands what we are going through. It can affect our self esteem, along with decisions we make about our social lives, and even our work lives.

There is a new Facebook discussion group that addresses this subject. Having followed it the past few days, I realize how many people need to know they are not alone in dealing with this invisible disability. It's also obvious that many find general conversation about the emotional side of HL helpful. Sometimes we just need to talk.

If you're willing to share: How does hearing loss affect you emotionally?

Interested in more discussions like this? Go to the Hearing Loss group.

@ksly008

Thanks Mary for your reply.
I watch TV with Volume 20+ and still unable to catch the speech where as my wife only used Volume 8. With my volumes, other sounds got amplified. With my HA's noise filter, it helps reduce the noise but still not to my satisfaction. I rate it 70% or less satisfactory.

I really like to talk to someone who have positive view on HA.

My first HA was Siemens and I paid $1500 out of pocket in 2015, then I had the second Signia also by the same company and paid $2,000 out of pocket. Then I bought the best one – Resound HA from Costco for $2,600 as I felt I had to pay the same price if I went with the company my insurance assigned as they marked up the price.

I believe there are 2 things needed to get a satisfactory HA to perform up to your satisfaction and there are inter-related. A decent HA is one: the unit should be able to automatically set your HA best on your HA testing data. That would require a very competent audiologist or the money paid will be wasted. And it is the hardest to find one.

After my first HA failed me, I thought I should get one audiologist who also wore a HA would solve the problem. I was wrong. The fact is: Remember when you have a hearing test, the audiologist would ask you to to repeat a word or a short phase. Imagine when I heard and said correctly but she heard what I said incorrectly. That was the problem.

Did you live in Los Angeles? If so, I would like to see your audiologist!

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@ksly008 Have you ever participated in an HLAA event? There are chapters in the LA area that are active and full of information. Chapters of the Hearing Loss Assn. of America, Inc. share information and experiences, including that about providers as well as about products. HLAA doesn't endorse either, but its members have a lot of information to share.

HLAA chapter meetings are open to anyone interested in learning more about how to live well with hearing loss. Check out the information at http://www.hearingloss.org HLAA holds conferences and conventions and is also a resource for a lot of podcasts on every topic imaginable when it comes to technology, research and personal experiences.

For some reason, probably because so many people refuse to talk about hearing loss, HLAA, which is a consumer based organization, is too much of a 'best kept secret'. It should not be. Are you familiar with this organization?

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@julieo4

Thank you for your wisdom and experience sharing Mary. My experience mirrors yours quite a bit.

It's so important to have a provider that is willing to work with you when things aren't as expected. Everyone is different. Unfortunately, one of the similarities among people who are struggling with hearing loss is to be frustrated and displeased with the product and the provider.

Many whom I know have been very happy with hearing aids fit and provided by big box retailers like Costco. Others are not. The training of the fitter is extremely important as is that person's patience with the frustrated hearing aid buyer.

And yes, every person's hearing loss is unique. Some are far easier to fit than others. That's where the experience of the fitter comes in big. It's also where issues that go beyond basic hearing loss might be in play.

Fitting hearing aids properly is a skill, particularly when the person being fitted has a unique loss. Most progressive hearing loss is caused by noise exposure, drug interactions, or normal aging. However, it can sometimes be caused by medical issues that need treatment aside from hearing technology.

The audiology profession has had to adapt to a lot of changes. It's important for all of us to know that some of the fitters/providers have doctorate level degrees in the field, they are AuD (Doctors of Audiology), others may have a master's degree and be identified with the letters MS-CCCA or MA-CCCA for master's degree certified clinical competence in audiology.

Many who work as assistants or at the big box stores have far less education and are called 'hearing instrument specialists'. HIS requires no college degree at all, but training in the field as an apprentice.

If a person's hearing loss is not complex, basic amplification may be all that is needed. However, if it is more advanced and unique it may need many adjustments before it feels right.

Important though, is to understand that hearing aids do not 'cure' hearing loss. They do not fully correct it either. They are 'aids' to better hearing. People who adjust to using them usually find they are extremely helpful, and greatly missed when not available.

How do you react to suggestions provided by your provider? How does your provider react to the concerns you express at your appointment(s).

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@julieo4

My Audi, I think, is unique in that she loves to hear any and all suggestions or just about anything I have to say. She knows I know a lot about hearing loss and that I can express precisely what I need. She has let me trial a few other brands (no payment required) knowing in her heart that they would not be as good a fit as the Phonaks and she was right. I needed to find out myself and then she took notes on the whys and whats of my experience.
She gets so excited when things turn out well and she has helped someone.
She was the one who researched molds for me and decided to go with a different company. The first new mold a couple of months ago didn’t work out so I did not pay for it. I actually cut it down because it was irritating and she has since ordered another one. I get a lot of goodies, batteries, tubing. I swapped some tubing last time that I don’t use anymore and she gave me some of what she had.
I know about her family and kids and she pretty much knows about me and what I do. So you can see this friendship developed over the years.
She’s passionate about her work and interested in anything I know that she doesn’t. She’s a great Audi and I have had one very good one , one excellent hearing aid specialist and one amazing hearing aid specialist….and then some awful or indifferent ones in the past.
So, if someone can’t get a recommendation, than it’s trial and error . If you are not happy with any of the aids you have bought from one provider and are not getting satisfaction, then it’s time to move on.
Someone new to hearing aids won’t know what to expect so it’s hard to judge sometimes. I have offered to go with anyone and sit in, if allowed, for first time buyers but no one has taken me up on that.

So much for a short answer
FL Mary

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@ksly008

Thanks Mary for your reply.
I watch TV with Volume 20+ and still unable to catch the speech where as my wife only used Volume 8. With my volumes, other sounds got amplified. With my HA's noise filter, it helps reduce the noise but still not to my satisfaction. I rate it 70% or less satisfactory.

I really like to talk to someone who have positive view on HA.

My first HA was Siemens and I paid $1500 out of pocket in 2015, then I had the second Signia also by the same company and paid $2,000 out of pocket. Then I bought the best one – Resound HA from Costco for $2,600 as I felt I had to pay the same price if I went with the company my insurance assigned as they marked up the price.

I believe there are 2 things needed to get a satisfactory HA to perform up to your satisfaction and there are inter-related. A decent HA is one: the unit should be able to automatically set your HA best on your HA testing data. That would require a very competent audiologist or the money paid will be wasted. And it is the hardest to find one.

After my first HA failed me, I thought I should get one audiologist who also wore a HA would solve the problem. I was wrong. The fact is: Remember when you have a hearing test, the audiologist would ask you to to repeat a word or a short phase. Imagine when I heard and said correctly but she heard what I said incorrectly. That was the problem.

Did you live in Los Angeles? If so, I would like to see your audiologist!

Jump to this post

@ksly008

I live in Florida …west coast…Tampa Bay Area. Everyone wants my Audi and I have referred people to her.

FL Mary

REPLY
@pokni

My hearing loss has been progressive, now I also have "word recognition" which hearing aids won't help. Often in a group setting people are talking, they think I'm hearing what they're saying but I'm not. Asking people to repeat what they said is mixed. Some will repeat, others are annoyed.
What I dislike the most is feeling shut out from what is going on around me. People who don't have a hearing issue really don't understand.
Wish the "word recognition" had some kind ofa solution.

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@pokni Poor word recognition is very common among people with sensorineural hearing loss. Perhaps you were originally diagnosed with conductive hearing loss, which is a condition that affects the middle ear. It can be helped considerably with pure amplification, so it's an easy hearing aid fit.

Sensorineural hearing loss (SNHL), which affects the inner ear/cochlea is a different story. It's also the most common type of hearing loss. It distorts speech as it eliminates certain sounds the cochlea cannot send to the brain for identification. Consequently, the brain is only getting part of the sounds that identify words. That affects word recognition.

Interestingly, there are predictable confusions. They are in the consonants in our language. We can hear the vowels easily because they require power in speech. A,E,I,O,U have power. The consonants, alone and combined, are softer sounds that are easy to mishear. S, V, TH, F, B, CH, L, R are examples.

Take a 4 syllable word and erase the consonants from it. Would you know what you heard if you only heard those vowels? Probably not. Now, use the same word and erase the vowels. The consonants are still there and you have a much better chance at understanding the word since consonants are the 'identifiers' in our language. Here's a word: i_ _o_ _i_ _ e It's 4 syllables with only vowels. Do you know what it is?

Here it is with no vowels; only consonants:
_mp_ss_bl_ Of course 'context' in the conversation is always a clue, but conversation goes so fast, we have trouble keeping up.

Back to the 'word recognition' issue. I've been using hearing aids for over 40 years. They are much better than they were back in the day. Of course, my hearing loss has gotten worse, so my word recognition scores deteriorated. Enter hearing aids used with add on assistive technology like a hearing loop, an FM system, mini microphone, etc. and my word recognition approved considerably.

It continued to deteriorate over the years until I was testing in the 20% correct range. It was time for me to get a cochlear implant. I did, and my word recognition now tests over 93%. It's less in noise, but is well over 60%, which is typical even for people who have good hearing. Background noise affects everyone, but people like us even more.

I encourage you to not give up. Your provider seems to be shutting you down. Has your provider ever discussed add on technology that will work with your hearing aids? Do you know what a PocketTalker is? Bluetooth accessories, hearing loop?

Ask about cochlear implants. Have they been mentioned?

REPLY
@julieo4

@pokni Poor word recognition is very common among people with sensorineural hearing loss. Perhaps you were originally diagnosed with conductive hearing loss, which is a condition that affects the middle ear. It can be helped considerably with pure amplification, so it's an easy hearing aid fit.

Sensorineural hearing loss (SNHL), which affects the inner ear/cochlea is a different story. It's also the most common type of hearing loss. It distorts speech as it eliminates certain sounds the cochlea cannot send to the brain for identification. Consequently, the brain is only getting part of the sounds that identify words. That affects word recognition.

Interestingly, there are predictable confusions. They are in the consonants in our language. We can hear the vowels easily because they require power in speech. A,E,I,O,U have power. The consonants, alone and combined, are softer sounds that are easy to mishear. S, V, TH, F, B, CH, L, R are examples.

Take a 4 syllable word and erase the consonants from it. Would you know what you heard if you only heard those vowels? Probably not. Now, use the same word and erase the vowels. The consonants are still there and you have a much better chance at understanding the word since consonants are the 'identifiers' in our language. Here's a word: i_ _o_ _i_ _ e It's 4 syllables with only vowels. Do you know what it is?

Here it is with no vowels; only consonants:
_mp_ss_bl_ Of course 'context' in the conversation is always a clue, but conversation goes so fast, we have trouble keeping up.

Back to the 'word recognition' issue. I've been using hearing aids for over 40 years. They are much better than they were back in the day. Of course, my hearing loss has gotten worse, so my word recognition scores deteriorated. Enter hearing aids used with add on assistive technology like a hearing loop, an FM system, mini microphone, etc. and my word recognition approved considerably.

It continued to deteriorate over the years until I was testing in the 20% correct range. It was time for me to get a cochlear implant. I did, and my word recognition now tests over 93%. It's less in noise, but is well over 60%, which is typical even for people who have good hearing. Background noise affects everyone, but people like us even more.

I encourage you to not give up. Your provider seems to be shutting you down. Has your provider ever discussed add on technology that will work with your hearing aids? Do you know what a PocketTalker is? Bluetooth accessories, hearing loop?

Ask about cochlear implants. Have they been mentioned?

Jump to this post

@julieo4

A great explanation! I especially like that you said consonants are the identifiers in our language….never heard it expressed that way and an easy way to explain to someone.
I had a page taken out of a book once that had the consonants blanked out. It was mainly to show hearing people what it is we actually hear and it was a shocker to them. They couldn’t read it. I lost it over the years but I plan (on my list) to replicate it and , when I do, I will attach a photo of it.
FL Mary

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@imallears

@julieo4

A great explanation! I especially like that you said consonants are the identifiers in our language….never heard it expressed that way and an easy way to explain to someone.
I had a page taken out of a book once that had the consonants blanked out. It was mainly to show hearing people what it is we actually hear and it was a shocker to them. They couldn’t read it. I lost it over the years but I plan (on my list) to replicate it and , when I do, I will attach a photo of it.
FL Mary

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I've often had people at a workshop read from a familiar book, or speech like The Gettysburg Address. Remove one of the difficult sounds in the first paragraph. Time the reader. It goes pretty well partly because it's familiar. Then go to the next paragraph and remove a couple more of those sounds. Have a hearing person do the reading, and have another one time them. After a couple paragraphs they give up and the time it has taken them to figure out even part of it is doubled or tripled.

That shows how exhausting it is, especially when you're being timed. 🙂 Auditory fatigue is real.

REPLY
@julieo4

@pokni Poor word recognition is very common among people with sensorineural hearing loss. Perhaps you were originally diagnosed with conductive hearing loss, which is a condition that affects the middle ear. It can be helped considerably with pure amplification, so it's an easy hearing aid fit.

Sensorineural hearing loss (SNHL), which affects the inner ear/cochlea is a different story. It's also the most common type of hearing loss. It distorts speech as it eliminates certain sounds the cochlea cannot send to the brain for identification. Consequently, the brain is only getting part of the sounds that identify words. That affects word recognition.

Interestingly, there are predictable confusions. They are in the consonants in our language. We can hear the vowels easily because they require power in speech. A,E,I,O,U have power. The consonants, alone and combined, are softer sounds that are easy to mishear. S, V, TH, F, B, CH, L, R are examples.

Take a 4 syllable word and erase the consonants from it. Would you know what you heard if you only heard those vowels? Probably not. Now, use the same word and erase the vowels. The consonants are still there and you have a much better chance at understanding the word since consonants are the 'identifiers' in our language. Here's a word: i_ _o_ _i_ _ e It's 4 syllables with only vowels. Do you know what it is?

Here it is with no vowels; only consonants:
_mp_ss_bl_ Of course 'context' in the conversation is always a clue, but conversation goes so fast, we have trouble keeping up.

Back to the 'word recognition' issue. I've been using hearing aids for over 40 years. They are much better than they were back in the day. Of course, my hearing loss has gotten worse, so my word recognition scores deteriorated. Enter hearing aids used with add on assistive technology like a hearing loop, an FM system, mini microphone, etc. and my word recognition approved considerably.

It continued to deteriorate over the years until I was testing in the 20% correct range. It was time for me to get a cochlear implant. I did, and my word recognition now tests over 93%. It's less in noise, but is well over 60%, which is typical even for people who have good hearing. Background noise affects everyone, but people like us even more.

I encourage you to not give up. Your provider seems to be shutting you down. Has your provider ever discussed add on technology that will work with your hearing aids? Do you know what a PocketTalker is? Bluetooth accessories, hearing loop?

Ask about cochlear implants. Have they been mentioned?

Jump to this post

Very interesting. I get my hearing aids from Costco. They seem knowledgeable but what do I know? They have pretty sophisticated ways to check your hearing. I think my hearing aids I have now are my 4th pair. My 3rd pair is when they said I had word recognition problems. My hearing aids are rechargeable, the brand is Jabra (I think advanced Pro). They have Blue Tooth and are synced to my iPhone.
I'm inclined to do research and then more research. It looks like the Pocket Talker would be warn in conjunction with hearing aids (I think). That seems like a bit much to wear (especially having to wear a mask for Covid). In some scenarios (like living in a senior center as I do) they require it for the most part.
Thank you so much for this information, it gives me a starting place to research possibilities to enhance my hearing. Much appreciated. 🧡

REPLY
@imallears

@julieo4

You are a font of information and wonderful suggestions. I always get excited when someone acknowledges or understands my hearing loss after I have explained things to them. I get even more joy when they remember what to do and not do next time I see them. I truly believe that all the personal advocating I have done over the years has paid off , not only in helping me but in making others more aware and sort of passing it on.
As stated before, most people are kind and “get it” but there will always be the “jerk”…sorry no other word comes to mind. If you can accept yourself and you have done all you can do to make things better than worry no more. It is what it is is my motto. But of course, like you, I have had years to come to this way of thinking.

People today who are new to hearing loss have so many resources that we didn’t have eons ago.

Someone mentioned the gym…the least favorable place for hearing loss. When there is music it is genuinely loud and I turn down my aid. Honestly the gym rats (I am more of a gym mouse) will all be like me in a few years. I don’t understand the intensity of the volume but, as someone mentioned, maybe they already have a loss and it’s not loud to them. Don’t think that will change.

Enough said for tonight. I’m unplugging and watching my good old captions on Netflix. Oh,
by the way, my door is always open and I live across the breezeway from family. When my aids are out I stick a note up on the front door saying “Not wearing hearing aids…Don’t scare the C… out of me.” They usually flick my kitchen light on and off when they come in. So funny.

FL Mary

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That is odd that you have issues with music being loud in a gym. Every gym I have been to has the music low. Most people play their own music with headphones on. I do that too. I unless you are talking about a gym class where they do play the music louder but it isn’t as loud as if I went to a dance club. That’s where the music is the loudest for me.

REPLY

@mickey5909

Hi,

The gym classes were the places where the music is too loud. Classes are held in a fairly large separate room with or without the door closed. Our regular instructor doesn’t use music. Our substitute instructors do and other people have asked them to turn the volume down. They can’t hear from the back row. Any background music can be hard for people with hearing loss. I actually enjoy background music for some of the classes if it is at what I perceive to be a reasonable level. It depends on the type of music too. And it is motivating and fun….but……

Out on the main floor there is quiet background music sometimes but, as you said, everyone is plugged in.

FL Mary

REPLY
@imallears

@ksly008

I live in Florida …west coast…Tampa Bay Area. Everyone wants my Audi and I have referred people to her.

FL Mary

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Too bad she is not in Los Angeles. I had seen 4 audiologists so far and didn't help.
Last HA, I bought the best one in Costco. I will try another audiologist from another store.

REPLY
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