The Emotional Side of Hearing Loss

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.

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?

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.

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.

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.

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.

@mickey5909 I feel the same way about being near water. I'm paranoid about going out in the rain due to the risk of damaging my aids. Many years ago, I went to a water park. I didn't want to leave my aids on the beach so I put them in a zip lock bag, thinking they would be safe. I went swimming with the aids in a bag but when I got out of the water, the zip lock was filled with water and my aids were doing their own swimming, LOL. Fortunately, after the aids dried, they still worked. Back then, my aids were analog. As long as the aids were not powered, they did not get damaged. I'm not sure if the digital aids are as forgiving. I'm not going to test the theory though.
Tony in Michigan

Dr. Jeff King of Audiology Concepts in Edina, Mn, 952– 83 1-4222 is an excellent audiologist. Dr. Cliff Olson recommend Audiology Concepts and if you are not familiar with Dr. Olson of Anthem Arizona Google him and listen to his excellent videos. Good luck.

There's some interesting 'history' on this 'who are we' issue too. For generations we were all referred to as deaf in most research done on hearing loss. When HLAA was founded in 1979 as 'Self Help for Hard of Hearing People, Inc.', it gave the partially deaf population a voice, and a name. That name being 'hard of hearing' as separate from those who were deaf.

Many people did not care for the term 'hard of hearing', but after considerable debate, it became the standard terminology. There just wasn't another term that seemed to work. The trend became using the term 'hearing impaired' when referring to all people who have any degree of hearing loss.

Along came the 'politically correct era'. The word 'impaired' became politically incorrect. Very few within the hard of hearing population found that offensive, but the culturally Deaf population did, so the term hearing impaired became an issue although it is still used in research bodies.

It's important for those of us who consider ourselves 'people who prefer to remain in the hearing mainstream by using technology ', to understand the difference between 'BIG D Deaf' and 'deaf'.

People who are Deaf have a culture all their own. They consider their deafness a 'difference' rather than a 'disability'. They are opposed to curing hearing loss, and created a lot of turmoil when cochlear implants started helping people remain in the hearing mainstream. This was sensational enough for the media to pick up on and feature this unusual mind set in many public forums.

As a hard of hearing person who is clinically deaf without the technology I use, I have had to stand up and speak up in many instances when people have confronted me with this. They have asked me "How could you possibly not want a cure for your hearing loss?" I was easily bundled right into that Deaf attitude that did not reflect my views at all. The good thing was that it gave me the opportunity to explain this to whomever asked me that question. Still, this profound attitude did slow down research in medicine and technology for a time.

You hear me promote HLAA often. By emerging in 1979 to give our population a voice, we have been able to hold our ground. Research has concluded that communication disorders, of which hearing loss is one, is far more prevalent than believed prior to the founding of the National Institute on Deafness and Communication Disorders (NIDCD) in 1988, within the National Institutes of Health. HLAA, then called SHHH was very much behind that. (SHHH became HLAA in 2006.)

Statistics today show there are nearly 50 million Americans who experience hearing loss to some degree. Fewer than 2 million of those people are of Deaf culture. The other 48 million want to hear, do what they can to hear, and/or are frustrated because they don't know what to do to hear. We are 'the hard of hearing population'. While many of us are actually deaf (small d), we are not, and never will be Deaf (big D Deaf) because we do not use American Sign Language. (ASL) or consider ourselves part of an exclusive community.

Can we learn ASL? Of course we can, but in most instances it would be like learning a foreign language that none of our family members, co-workers, etc. use. We would have no one to communicate with. The culturally Deaf population is very tight knit. Many intermarry. Many work in Deaf organizations. They tend to socialize together, etc. We hard of hearing folks tend to live in the mainstream with the native language we need to use to communicate.

I tend to identify my situation by saying "I do not hear well, and may need you to repeat something." If the person I'm trying to request help from doesn't get it, which does happen, I will say "I am deaf. I need you to _________ (whatever it is that I need, be it something in writing, turning down background sounds, moving to another area to communicate, etc.) Bottom line here is that I am one of about 48 million people who function as 'hard of hearing'. Love it or hate it, that term is the one most often used.

Last word here is the importance of knowing what works in specific situations. If you need assistance, ask for it. If you enjoy movies, performing arts, meetings, etc., use the technology that is mandated by the Americans with Disabilities Act. Those venues do not have to provide it unless it's requested. So it takes some advanced advocacy and education to get them to get it. And that, like it or not, is up to us to do. You cannot walk into a public venue and insist on 'communication access', but you can tell them they need to provide it for you the next time around so they have time to get it installed. You likely will have to educate them and be a bit pushy. That's called advocacy.

It's important to be upfront about your needs. You don't have to start with "I'm sorry". Know what works for you and do the education needed to help get it.

Are you willing to learn about hearing assistive technology that can make a difference? Are you willing to try it?

Thanks, Julie! Great history lesson for us all. Big thing is, if you want to communicate (requires back and forth of some form of ‘speech’ (ASL being one and voice another) you must advocate for yourself.
Example: I have been, in a professional situation, teased and joked about by colleagues; struggled to hear my clients when in my quiet office, and avoided the phone at all costs. When I finally resorted to using the word little d deaf, I was ready to tear my hair out over the lack of respect and professional behavior in our clinic.
When I finally did say “I am deaf.” Boy! Did things begin to change. I called for ADA accommodations and they were provided. I “got by” before the accommodations appeared but after they did, I began to thrive. Sometimes it’s like Teddy Roosevelt said, “Walk softly and carry a big stick.” When I pulled out the stick, my colleagues got the message.