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.

@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?

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@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.

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@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. 🧡

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@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.

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@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.

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I appreciate this discussion as I too have been feeling very alone in dealing with hearing loss. I hate to constantly ask people to repeat what they’ve said. I also hate only getting bits and pieces of group conversations.

I have moderate hearing loss as well as tinnitus and have used Widex Evoke hearing aids for more than three years. For the first couple of years, I did pretty well. Over the past year or so my hearing has deteriorated and my tinnitus has become more troubling. I’ve wondered whether the tinnitus in particular has been affected by the Covid vaccinations and boosters I have had.

I have increasing difficulty hearing in any situation where there is background noise, and I find myself making choices of activities to avoid noisy spaces. Music has always been extremely important to me, but despite the fact that I emphasized with my audiologist how important music is to me, now I rarely listen to it, because it does not at all sound the way it used to. It sounds one-dimensional and tinny, often even off-key.

I no longer enjoy live theater and concerts, movies in theaters, sporting events, and even worship services are problematic. There may be assistive devices and other approaches that would serve me better, but I don’t believe my audiologist is very committed to spending the time and effort necessary to help me deal with some of the things I have lost as a result of hearing loss. I am located in Minneapolis. Any suggestions of excellent audiologists in this area would be extremely welcome.

Thank you for providing a space for this discussion.

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@kmseay

I appreciate this discussion as I too have been feeling very alone in dealing with hearing loss. I hate to constantly ask people to repeat what they’ve said. I also hate only getting bits and pieces of group conversations.

I have moderate hearing loss as well as tinnitus and have used Widex Evoke hearing aids for more than three years. For the first couple of years, I did pretty well. Over the past year or so my hearing has deteriorated and my tinnitus has become more troubling. I’ve wondered whether the tinnitus in particular has been affected by the Covid vaccinations and boosters I have had.

I have increasing difficulty hearing in any situation where there is background noise, and I find myself making choices of activities to avoid noisy spaces. Music has always been extremely important to me, but despite the fact that I emphasized with my audiologist how important music is to me, now I rarely listen to it, because it does not at all sound the way it used to. It sounds one-dimensional and tinny, often even off-key.

I no longer enjoy live theater and concerts, movies in theaters, sporting events, and even worship services are problematic. There may be assistive devices and other approaches that would serve me better, but I don’t believe my audiologist is very committed to spending the time and effort necessary to help me deal with some of the things I have lost as a result of hearing loss. I am located in Minneapolis. Any suggestions of excellent audiologists in this area would be extremely welcome.

Thank you for providing a space for this discussion.

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There is an HLAA chapter in the Twin Cities. It would be worth your time to connect with them as they would have information about providers, accessible venues, products, etc. Email: president@hlaatc.org

They hold regular meetings, many of which are on Zoom videoconferencing. Some are in person. They are communication accessible because all meetings provide live captioning, and assistive technology that will work with your hearing aids.

HLAA, which is a consumer organization provides a super place to ask questions about products and providers. HLAA doesn't endorse or promote either, but members do share their experiences; both positive and negative. People will steer you in the right direction for positive professional support.

The large majority of answers I've gotten over the 40+ years I've needed support have come from HLAA. The organization's national website is: http://www.hearingloss.org

HLAA stands for The Hearing Loss Association of America, Inc. HLAA advocates for communication access in public places, promotes research in medicine and technology and provides a lot of peer support to people who become members. Membership is not required to benefit from HLAA. Membership simply provides support for the organization and the advocacy it does for all of us who have hearing loss.

FYI, background noise is the single most common complaint and issue for people with hearing loss. It takes courage to keep going and doing all the things you love to do. It's possible though if you are willing to learn about assistive technology, coping skills, and can find people who know what you are dealing with who are willing to be share experiences. Having your experiences and feelings validated by others is healing.

Do you know about HLAA?

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@julieo4

There is an HLAA chapter in the Twin Cities. It would be worth your time to connect with them as they would have information about providers, accessible venues, products, etc. Email: president@hlaatc.org

They hold regular meetings, many of which are on Zoom videoconferencing. Some are in person. They are communication accessible because all meetings provide live captioning, and assistive technology that will work with your hearing aids.

HLAA, which is a consumer organization provides a super place to ask questions about products and providers. HLAA doesn't endorse or promote either, but members do share their experiences; both positive and negative. People will steer you in the right direction for positive professional support.

The large majority of answers I've gotten over the 40+ years I've needed support have come from HLAA. The organization's national website is: http://www.hearingloss.org

HLAA stands for The Hearing Loss Association of America, Inc. HLAA advocates for communication access in public places, promotes research in medicine and technology and provides a lot of peer support to people who become members. Membership is not required to benefit from HLAA. Membership simply provides support for the organization and the advocacy it does for all of us who have hearing loss.

FYI, background noise is the single most common complaint and issue for people with hearing loss. It takes courage to keep going and doing all the things you love to do. It's possible though if you are willing to learn about assistive technology, coping skills, and can find people who know what you are dealing with who are willing to be share experiences. Having your experiences and feelings validated by others is healing.

Do you know about HLAA?

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Julie, thank you so much for your comprehensive response. I only know about HLAA because of reading about it here, but I agree it sounds like a great resource. My connection with the audiologist I have been using was by happenstance, and I have not felt supported in what I need to learn and do for quite some time, essentially after purchasing the HAs. I will definitely reach out to HLAA for further information, support, and companionship in dealing with my hearing loss.

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@kmseay

Julie, thank you so much for your comprehensive response. I only know about HLAA because of reading about it here, but I agree it sounds like a great resource. My connection with the audiologist I have been using was by happenstance, and I have not felt supported in what I need to learn and do for quite some time, essentially after purchasing the HAs. I will definitely reach out to HLAA for further information, support, and companionship in dealing with my hearing loss.

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You are very welcome. I live in Wisconsin. We have 4 active chapters there. Being involved has given me more than I can ever repay.

I hope you find information and support from the Twin Cities Chapter. Please keep us posted.

I spent summers in north central Minnesota, and have often wished there was a chapter in that part of the state.

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Interesting discussion, thanks!
I have struggled with the question, “What do I call myself?” over the years as my hearing/speech understanding decreased. At first I referred to myself as HoH, worked fine. I’d start conversations in school or at work with “I’m hard of hearing, it is an invisible disability. I may need to ask you to slow your speaking down and enunciate more clearly as well as ask you to look at me so that I can speech read.” Then, my hearing got worse. My audiologist said I wasn’t yet capital D Deaf but could say Hard of Hearing/deaf. So, I did that for a few years, advocating more and more strongly for myself (and faking it when people just would not slow down. Now, I am small d deaf. Without my HA and CI, I am profoundly deaf. Because I am not a member of the D-Deaf community, don’t sign and was deafened later in my life I am a little d deaf.
It is so exhausting. I am so grateful for my Cochlear Implant though, I wear out when in stressful hearing situations (airports) but it is nothing like it was when I had only my HAs. My Nadia wonders kept me afloat until they didn’t and I’ll always be grateful for my wonderful audiologist and her encouragement to go up the scale to better HAs when necessary.
I really like reading about others emotional well being. We’re pretty lucky to have this forum.

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We are taking a beach vacation this week. While I love the beach I don’t like being in water because I need to go without my aids and can’t enjoy any conversation I could have. It is very isolating. I always avoid pools and water parks. Granted I’ve been hearing impaired my whole life so I have gotten used to it but there aren’t times where I just wish I could have normal hearing so I don’t need to worry about those types of things.

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