Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

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

@contentandwell

@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

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@contentandwell, Meniere's doesn't always cause complete deafness. I know of some that do well with hearing aids. I also know of many with CI.

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@bille I appreciate the information you shared about hearing aids. You might wish to add your thoughts and experiences to this discussion:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/

For those discussing Cochlear implants (CI), you might be interested in this information from:
– Mayo Clinic https://www.mayoclinic.org/tests-procedures/cochlear-implants/care-at-mayo-clinic/pcc-20385023
-Hearing Loss Association of America https://www.hearingloss.org/hearing-help/technology/cochlear-implantable-devices/

@babarker frustration due to hearing loss isn't uncommon. It must be particularly frustrating when loss of hearing has contributed to your making choices you might not otherwise have made, like declining teaching opportunities. Is teaching something you would otherwise like to do? Do your work colleagues know about the hearing loss?

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@colleenyoung

@bille I appreciate the information you shared about hearing aids. You might wish to add your thoughts and experiences to this discussion:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/

For those discussing Cochlear implants (CI), you might be interested in this information from:
– Mayo Clinic https://www.mayoclinic.org/tests-procedures/cochlear-implants/care-at-mayo-clinic/pcc-20385023
-Hearing Loss Association of America https://www.hearingloss.org/hearing-help/technology/cochlear-implantable-devices/

@babarker frustration due to hearing loss isn't uncommon. It must be particularly frustrating when loss of hearing has contributed to your making choices you might not otherwise have made, like declining teaching opportunities. Is teaching something you would otherwise like to do? Do your work colleagues know about the hearing loss?

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Most of my peers know about my hearing loss but do not understand what it we experience. They have no clue and it is difficult to describe to someone who has not experienced it. Yes I would definitely do more teaching if it weren’t for my disabilities. Along with hearing loss I also have what is called essential tremor in my hands which makes it next to impossible to hold a piece of paper in my hands. For that I try to use a Potium to lay my notes on. I have been asked to teach at national conferences but always find some excuse to get out of it due to the embarrassment of my disabilities. My only outlet, which enables me to share my knowledge with others, is to write and converse with individuals through forums, blogs and emails such as this.

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I am very sorry to hear how your hearing loss has limited your life. It is comletely understandable.I encourage you to find a way to do those things you like to do. Is there any possibility you could have an assistant or a friend at those venues you mention to help you interpret and understand etc? As for being embarrassed, try not to be! It’s like eye glasses, or a limp, or any number of things. Everyone has something! It is an opportunity to share and educate people on hearing loss I think. As my hearing loss continued to deteriorate and I was no longer able to think it would come back or maybe infection, haha, I simply continued with my Italian lessons and working as an Interior designer. This is not to say it isn’t hard or exhausting which is true for both. But I explained to everyone I needed to be spoken to face to face and I found people very understanding in Italian class and work, I dropped out of those things I didn’t enjoy as much which in a way was a relief. I find larger social groups much harder because even if people know, they initially “yell” at you and then forget and go on as normal. It is exhausting trying to hear and I appreciate that. Sometimes I do opt out or turn off my HA in loud restaurants. Usually one person, my husband, or someone will help me out repeating or explaining the important, like what the waiter is saying. Not ideal but unfortunately, the other alternative is not to participate and that is even less fun so we just keep going as best we can. And like you, I am a writer and have thanked my lucky stars that I have always been a voracious reader and not a TV watcher and can “hear perfectly” by email. As a PS today is 4 weeks since I had Cochlear Implant surgery and for these weeks even more deaf since only have 1 bad ear instead of 2. But my CI will be connected on Wednesday and I am excited and nervous. My best to you.

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@babarker I agree that online communications, blogs and forums like this one offer a new opportunities for mentoring and teaching for people with hearing loss. It is my hope that members like you and other members who have gotten this group off the ground, like @tulip @dstell @genuinekim @linkeellis and others, will continue to share your experiences and mentor people who are new to the world of hearing loss.

@christinahaire, I like how you have dropped things you didn't particularly enjoy to focus on adaptive approaches (both for you and/or those around you) to continue doing the things you love. I'd also like to bring @airotto370 into this discussion. He's shared about compensating and adapting in his first post.

What's one thing that you know now that you wished you have known? Or put another way, what would you tell someone new to hearing loss?

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Hearing loss can be a life changing and event if it comes on quickly but not impossible to deal with or adapt to.

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@colleenyoung

@babarker I agree that online communications, blogs and forums like this one offer a new opportunities for mentoring and teaching for people with hearing loss. It is my hope that members like you and other members who have gotten this group off the ground, like @tulip @dstell @genuinekim @linkeellis and others, will continue to share your experiences and mentor people who are new to the world of hearing loss.

@christinahaire, I like how you have dropped things you didn't particularly enjoy to focus on adaptive approaches (both for you and/or those around you) to continue doing the things you love. I'd also like to bring @airotto370 into this discussion. He's shared about compensating and adapting in his first post.

What's one thing that you know now that you wished you have known? Or put another way, what would you tell someone new to hearing loss?

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I would tell someone new to hearing loss to try and nurture patience and self compassion, if either/both are in short supply. The hearing loss journey is a marathon, not a sprint. There will be a lot of trial and error in countless ways, to enhance your listening experience. I would also be up front with people, whether it be family, work associates, medical personnel, or friends, about your hearing loss. I suffered through acoustically challenging work situations for several years, trying to fake it, fooling no one but myself.

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@colleenyoung

@bille I appreciate the information you shared about hearing aids. You might wish to add your thoughts and experiences to this discussion:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/

For those discussing Cochlear implants (CI), you might be interested in this information from:
– Mayo Clinic https://www.mayoclinic.org/tests-procedures/cochlear-implants/care-at-mayo-clinic/pcc-20385023
-Hearing Loss Association of America https://www.hearingloss.org/hearing-help/technology/cochlear-implantable-devices/

@babarker frustration due to hearing loss isn't uncommon. It must be particularly frustrating when loss of hearing has contributed to your making choices you might not otherwise have made, like declining teaching opportunities. Is teaching something you would otherwise like to do? Do your work colleagues know about the hearing loss?

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@colleenyoung CHC (Center for Hearing and Communications) in NYC is a non-profit organization with great services, that also reaches out to the community to help all hearing disabled people. I subscribe to their emails and get blog posts from them. Recently I got a new one written by one of the executives there — http://chchearing.org/blog/joyous-hearing-challenge-wedding/
There is also one about frustrations in social situations, https://katherinebouton.com/2019/01/21/is-it-ok-if-i-leave-now/
The author of the second blog post has a book that is available on Amazon and Barnes and Noble, "Smart Hearing". I have not read it, I just became aware of it, but I think I will purchase it.

If anyone is in the NYC area, I would highly recommend them for hearing services. I have been to one of the audiologists there and she was wonderful. Being non-profit, if you purchase hearing aids from them, what you pay is determined by your income.
I became aware of CHC because my daughter was a grant writer and organizer for them. They also have an office in Florida but I'm not sure what part of Florida it is in.
JK

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I have been an active member of the Hearing Loss Association of America (HLAA) since I became profoundly deaf in 2008. I have served on both the HLAA national and NYC boards. I am currently working to educate and encourage medical staff and hospitals to provide the aids and services we need to communicate effectively with providers and to participate in our own health care. Also to urge those of us who are hoh/deaf to ask for the services we need.

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@toniann

I have been an active member of the Hearing Loss Association of America (HLAA) since I became profoundly deaf in 2008. I have served on both the HLAA national and NYC boards. I am currently working to educate and encourage medical staff and hospitals to provide the aids and services we need to communicate effectively with providers and to participate in our own health care. Also to urge those of us who are hoh/deaf to ask for the services we need.

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Welcome to Connect,Toni Iacolucci @toniann. I am a hearing person, and I live in a community where we have a very active deaf/hard of hearing population.
I have friends who are hoh/deaf, and friends who are interpreters. From what I have picked up through interactions, is that there is a real need for the work that you are doing to promote an education to the medical staff and hospitals about the need for effetive communication to the hoh/deaf patients and family members. Thank you for what you are doing.

I feel that many of the hearing population do not realize the importance of having an interpreter for public events. Where I live, there is usually a 'tag' to request interpreter, or "Interprter provided" message. However, that is not always true outside of this community.

A deaf gentleman at my church, taught me the the ASL (American Sign Language) sign for the word PEACE. As an organ transplant recipient, it helps me avoid handshake germs.

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@wassy2019

I would tell someone new to hearing loss to try and nurture patience and self compassion, if either/both are in short supply. The hearing loss journey is a marathon, not a sprint. There will be a lot of trial and error in countless ways, to enhance your listening experience. I would also be up front with people, whether it be family, work associates, medical personnel, or friends, about your hearing loss. I suffered through acoustically challenging work situations for several years, trying to fake it, fooling no one but myself.

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wassy2019 @wassy2019, Welcome to Connect.
My mother had a hearing loss in her left ear, she denied it most all of her life. I think that her denial was partly stubornness, and partly monetary concerns, and even the fear of a negative attitude towards people who could not hear when she was growing up.
Have you experienced any challenging attitudes directed towards you as a result of of sharing your own hearing loss?

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Yes, people (young people especially), often associate hearing impairment with not being intelligent. This is upsetting on many levels, especially in a work situation. As I speak up about my loss, I find it better to put it out upfront – I say to the person that I have hearing loss and need them to speak to me when facing me,… This generally works well and puts the burden of communication on the other. If they forget to face me, and I can't hear, I repeat my request, but at this point, the responsibility shifts so that I am not 100% responsible to hear everything regardless of the environment. Sometimes the other person is the one to feel "less than" for not communicating properly!

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