The Emotional Side of Hearing Loss

When I wrote Shouting Won’t Help (2013), a memoir of losing my hearing, I went into full confessional mode. I wrote about my struggles with anxiety and isolation and depression as my hearing loss worsened.  I wrote about denial, anger, grief, about drinking too much and seeing a therapist, about losing my job.

I also wrote about practical matters like hearing aids and cochlear implants, access to audiologists, how to find a support group.

But when I gave readings to audiences with hearing loss, my emotional devastation was what people wanted to talk about. I remember one reading where three women sat together in the front row and cried through the whole event. Afterwards they thanked me for putting into words the grief and anger they themselves were experiencing.

I wasn’t the first to talk about the emotional fallout of hearing loss – people like Sam Trychin and Michael Harvey had been talking about it for years.  Web MD has a good discussion online, as do many other sites. But for many of those who came to my readings early on, the realization that they weren’t alone, and that it was okay to grieve, was new.

Many adjust to their hearing loss over time, as I did, and people who develop hearing loss at an early age are usually accepting of it as part of who they are. But for those who develop it in mid-life, especially if the onset is sudden, the emotional impact can be formidable.

Now three people with hearing loss have had the brilliant idea to create a Facebook forum where people can share their feelings. Richard Pocker, Mary Grace Whalen and Robin Chisholm-Seymour put their heads together and after months of discussion launched Hearing Loss: The Emotional Side at the beginning of June. They clearly hit a nerve, and as of this writing they have 900+ members and counting.

I talked to the creators via Google Meet last week. Richard is a retired business owner who wore hearing aids as a child and after losing all his residual hearing at age 30 managed by lipreading. After he retired to Florida, he learned about cochlear implants. He was bilaterally implanted in January 2016. His speech comprehension with the implants went from 0% to 85% with intensive rehab, some of which he designed himself. He went on to become a peer mentor for people with cochlear implants, then started a website and a podcast on implants. One of those he interviewed on the podcast was Robin Chisolm-Seymour, whose background is in mental/psychiatric healthcare. In her podcast interview, she talked about hearing loss as an amputation, and that sparked the idea for the Facebook page. They were joined by Mary Grace Whalen, a member of our New York City Chapter, who has published many articles on hearing loss since 1989 as well as writing on grief for the Hospice Foundation of America. She’s currently writing a memoir, “Living in the Color Magenta: Chronicles of a Deaf, Grey and Italian Woman.” All three are bilaterally implanted.

The three take turns monitoring the FB discussion, and if it starts to stray – towards the question of bilateral implants, say – one of them will steer the conversation back to the theme of the page: the emotional side of hearing loss. Readers raise their own issues, and jump in to comment on others’ posts. The discussions are generous, supportive and open.

I asked what surprised them most about the response and Richard said it was the number of people who say that they’ve never had a place to express these feelings before. “The emotion is just pouring out onto the page.”

Robin, with a background in counseling, said she was not surprised by this outpouring. Many people with hearing loss feel that they’re not understood, she said, and the page offers them a forum. Sometimes the moderators realize that someone is distressed beyond what a non-professional can do, and they try to guide them to professional support. “On the one hand we want people to share, that’s the plus side of a support group,” Robin said. “But if I pick up on something serious, I message them.” Sometimes she will refer people to professional counseling. She also cautions that everyone has a back story, their hearing loss doesn’t exist in a vacuum. So part of what she does is try to evaluate what else is impacting their life, because that can determine whether they’re going to take any action or not.

Mary said that they originally also hoped to be able to create a database of therapists who could treat people with hearing loss but so far that has not been possible. The grief that may accompany hearing loss is “disenfranchised grief,” she said, borrowing a term from Dr. Kenneth Doka, an expert and writer on grief, which society does not recognize as grief. “We’d like to be able to offer them resources that will help them heal.” (I mentioned that the Center for Hearing and Communications in New York City has counselors on staff, and that other organizations might as well. If readers know of counselors who specialize in hearing loss, please let us know.)

You can join the FB page by clicking here. Your comments won’t be posted until you’re approved by the moderators. Because it’s a closed group, the posts can not be shared. (For those who are not a Facebook users, “sharing” means copying the post onto your own page for others to see.) Our chapter also has a closed Facebook page, which we formed because in the absence of in-person meetings during Covid, we wanted people to have a place to talk to each other — to provide the companionship and support that can be lost during formal Zoom meetings. You can join us by clicking here.

Every January our chapter has an interactive meeting, moderated by someone on our board, where people can speak openly about their hearing loss. In past years, the topic has been stigma and how people experienced it. Another year the theme was self-advocacy and members shared their successes – and their failures. We had already planned that next January’s meeting would be about the psychology of hearing loss, with members sharing their own stories and offering support to others who may have had similar experiences.

In the meantime, “Hearing Loss: The Emotional Side” offers another way to express those feelings.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

Hearing Loss Won’t Kill You, or Will It?

I published this post on my Psychology Today blog, which is aimed at psychotherapists. But I thought the readers of this blog might also find it interesting.

If you are a therapist and have a patient with hearing loss, please read this to get a sense of what your patient may be experiencing.images

I lost much of my hearing gradually, over 30 years. And then, eight years ago, I lost almost all of the rest of it in a single day. Eventually I got a better hearing aid and a cochlear implant, but I never heard well again.

I was forced to leave a job I loved. Caring for my elderly parents was almost impossible because I couldn’t hear them, I couldn’t hear their health-care providers, and I couldn’t call 911 in an emergency. I flew there often, mostly for crises, because the only way I could begin to function was in person, reading lips, asking for written notes. The stress was overwhelming.

My marriage was disintegrating because of the depression and anger my hearing loss caused. My young-adult children were unable to comprehend how their mother had turned so difficult. I quit my book club. I avoided going out with friends. On election night 2008, the night of Obama’s election, I declined a friend’s invitation to watch together and stayed home alone with a bottle of wine and a box of Kleenex. I drank myself to sleep before the winner was declared.

Most nights I slept no more than two hours at a time, often dissolving into crying jags in the middle of the night. I lost 15 pounds. I thought about ways I might kill myself, assuring myself I wouldn’t actually do it. But I thought it about it too much.

Fortunately I found help. A psychotherapist provided medication and talked me through those dark months. When I developed vertigo, she worked with my ENT to help find the right drug combination to keep it under control.

Hearing loss is not a lifestyle problem, it’s not just a normal part of aging. It is a deeply disruptive loss that changes everything about the way a person lives. Isolation and depression are common responses. It contributes to cognitive decline. Society dismisses it, and this makes it even harder to cope with.

I survived my hearing loss and became an advocate for education and accessibility for the deaf and hard of hearing. I am a board member of the Hearing Loss Association of America. I wrote a memoir of my struggles with hearing loss, Shouting Won’t Help, and included my email address so people could contact me. And they do. Sometimes the emails are heartbreaking. Yesterday morning I got one from someone I had never corresponded with.

The subject line was: “Rage, Anger, Depression, Abusing Alcohol.” I responded, and as more email came in over the day, I realized the writer was in serious trouble. She was essentially alone in a distant state. After consulting with psychotherapist friends I urged her to contact a mental health professional immediately. I wish I had been able to provide a reference for her.

This person had been on medication for depression and anxiety. Her hearing loss was not new, although it was newly worse. Whoever prescribed the medication seems not to have recognized the severity of the impact of her loss, or not to have successfully dealt with it.

There’s nothing more I can do for this person, but I urge therapists to take hearing loss seriously. Acknowledge the significance of the loss. Understand that hearing aids and cochlear implants don’t always work very well. Try to understand what it’s like to lose your means of communication with others. Try to imagine what it’s like to doubt everything you think you hear. Imagine the embarrassment of repeatedly asking for clarification a third or fourth time. Many people just give up. They isolate themselves, they get depressed, they decline cognitively. Sometimes they even think about suicide. Sometimes, they even carry it out.

When I was writing my book, I included the experiences of many people who worked in jobs where hearing well is important. I interviewed psychotherapists, musicians, nurses. I wanted a teacher and finally found a high-school teacher who had been forced to leave his job because he could no longer hear his students. I heard he was depressed and drinking. Before I was able to interview him he was killed in a single-car accident. The cause was never discovered.

For more information about living with hearing loss, my books  “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You” and “Living Better With Hearing Loss” are available at Amazon.com.