The Emotional Side of Hearing Loss

@scotdansr I understand what it is like to be your husband. I lost hearing in my right ear to SSHL in 5/2020. My left ear isn't that great either. My wife is soft spoken and naturally sits to my bad ear side: concerts, ball games, walking together, on the couch, everywhere. Talking to each other is mutually frustrating. I asked her if we can both learn sign language and use it to talk. What we are doing is not working for either of us. So we tried. We learned to sign to each other, we had to be in the same room together, we had to be looking at each other, and we had to only pay attention to each other without distraction. We realized doing those things is very hard to do. We both had to make changes. But, if we did those things, we didn't need sign language. We could talk to each other quite easily. Kind of ironic how that worked out. Anyone else ever try anything like that?

@scotdansr and others:
Living WELL with hearing loss is challenging. There are a lot of things people don’t understand about those challenges.
First, adult hearing loss is very different from that which happens in childhood, yet it is far more common. A major difference relates to education. Children who have hearing loss receive specialized training from speech pathologists and educational audiologists within their school system or cooperative educational systems within the state where they reside. They are helped with speech reading (lip reading). They learn to differentiate between difficult sounds. They learn to accept their 'difference'. They are supported in ways that people who lose hearing as adults have no access to.

We who become hard of hearing as adults receive very little, if any, support or training. Very few of the professionals in the field of otolaryngology, ENT, audiology, or primary care do counseling. Adults with hearing loss are left to fend for themselves. It costs deeply as relationships and careers are often affected.

Educators know those children can only listen so long before auditory fatigue sets in. In fact, data shows that 20 minutes of intent listening for a child with hearing loss is equal to an hour of listening for a child with typical hearing.

Adults with hearing loss often talk about how exhausting it is to concentrate in meetings and how difficult social events are. While adults may have more stamina than kids have, the reality is we sometimes simply stop listening because of fatigue even though we continue to look like we are paying attention. We bluff to avoid looking foolish. To make it even worse, sometimes we respond, and the conversation has already veered to a new topic which makes our response out of context. Obviously, this leads to frustration for everyone involved.

Research shows that when a person is struggling to hear and is concentrating fully, it may take them up to 5 seconds to answer a simple question in a conversation. they need to think and be sure they heard correctly. That can lead to interrupting a speaker who is repeating something that person with hearing loss appeared to ignore. Five seconds seems like 5 minutes to a speaker who is expecting an answer in a second.

My adult onset hearing loss, diagnosed at age 22, ultimately cost me my chosen career. I am fortunate to have had a family who adjusted to my unique needs. Life turned around for all of us when I discovered a fledgling organization that was starting to address the needs of hard of hearing adults. Getting involved took courage, but it gave me my life back. My feelings and frustrations were validated. I became a student of my hearing loss. I was OK. That organization has grown considerably in 45+ years. The Hearing Loss Association of America (HLAA) continues to provide support along with education and advocacy to millions of Americans with this invisible disability. Meeting other people who understand ‘it’ because they live with ‘it’ is positively life changing. Check it out.

By providing the Hearing Loss Support Group, Mayo Clinic Connect is giving people an opportunity to share experiences, learn how others handle them, and find hope for overcoming the frustrations and fears we have. Meeting people in person, when possible, is even better.

It's easier to be patient with someone who has unique needs when they are best understood.

@tomrennie I can't help but ask if you are using any assistive listening devices? There are some cool hand held devices that can transmit desired sound, such as speech from another person, directly to the hard of hearing person's hearing technology. One of the most basic is the Pocket Talker. Others are more sophisticated and designed to work with specific brands of personal hearing technology. They are worth having. Some interesting devices are available through Diglo.com a catalog that has a variety of assistive technologies used to help people with various disabilities. We learn about these things from one another for the most part. Our providers should tell us more about them and should have them on hand to try at appointments. Few do that, sadly.

@scotdansr

As someone with a profound bilateral hearing loss, I would like to tell you to rephrase anything you say to your husband if he does not understand initially rather than repeating the same words. Please be aware that there is a slight delay as we struggle to both hear and understand the spoken word…sometimes a split second, sometimes a few seconds.
Hearing people understand and hear simultaneously. This is why your husband responded to the initial question. Hearing people don’t understand this delay and start to repeat before we can start to respond. No more than 6 foot distance between speakers and listeners is the optimal space for us. Also your husband should repeat what he thought you said so you don’t have to repeat or rephrase the whole thing. And yes, we do have good and bad listening days depending on the environment or how we are feeling.

This is a 2 way street. He shouldn’t be asking you questions from another room when he knows he won’t be able to understand. Make it a rule in your house that you must be close by and preferably face to face when having a conversation. Make up your own sign language gestures for certain things. Have him use a cell phone app like Live Transcribe that can record what you are saying in most situations…check the play store on his phone.

When you are a couple living in close proximity, there are so many creative ways to interact verbally without being frustrated or playing the blame game.
You have to develop a real sense of humor.

FL Mary

@julieo4

I have hearing loss and wear hearing aids. One of the worst things is the music that is background to talking on tv. So unnecessary!! My wife mumbles and often I just ignore what she says because i don’t want to keep asking her to repeat.

Now let me tell you about my urinary problems….😂

@grahamh Betcha you don't like the music you hear on the phone when you are put on hold either! 🙂 Yup! Hearing loss comes with a lot of frustrations.

I have MES from what I gather. For about last 5 months. Musical Ear Syndrome. Yes, hearing musical tones or songs which are not present in the surrounding environment. I hear the same male chorus, singing in 4-part, usually unaccompanied. They sing the initial parts of standard patriotic, holiday and other we-known songs to someone my age. They come on when it suits them and may keep at it for hour or more. I hear the choristers only via my left ear, my “bad” one. The songs are intelligible, probably because I know them and probably sang them earlier on. I can’t turn them off until I become occupied with this or that task or project. The voices are slightly “tinny”. Favorites of my ear friend are “Battle Hymn of the Republic”, You’re a Grand Old Flag”, “Let It Snow, Let It Snow…” etc., “Frosty the Snowman”, and more. As I say, they never sing an entire song, but parts. I read MES is a precursor to deafness. I’m going to get the opinion of a neurologist in about a week. Not a psychiatrist. Call me crazy but I’m not. Among other possible causes is the one at whose feet most unexplained physical and psychological problems are lain: Stress. Well I have enough to share, and then some. At least for the last 5-6 months. But aren’t we all stressed at times. Perhaps later I’ll share my experience with seeing people & things not really there. These are abating thankfully. The latter are dangerous because twice I took actions based on what I thought I really had seen. None of this was BS. T