Have Hearing Loss? You Are Not Alone

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Hearing loss can make us feel isolated and alone, especially if we lose our hearing later in life. We are facing new challenges with communication, relationships and everyday living, but we don’t know who to talk to about them. Or what to do to overcome these difficulties. Often, we don’t have other people with hearing loss in our lives. We may feel like we are in this all by ourselves. But we are not. We have each other.

My Solitary Struggle with Hearing Loss

I first noticed my hearing loss in my mid-20s in graduate school, but my hearing loss journey began as a child, watching my father battle his own hearing issues. He was highly stigmatized by his hearing loss, doing everything he could to hide it — even growing his hair long over his ears to hide his hearing aids.

My father never asked anyone to speak louder or to switch seats so he could hear better. And because he never wanted to discuss his hearing loss, we never inquired what we could do to help support him. He must have felt so alone.

For many years, I followed his example, hiding my hearing loss and being embarrassed by it. I never asked for communication assistance, preferring to suffer in silence rather than disclose that I had trouble hearing.

But once I had children I realized this needed to change. I saw them watching me hide my hearing loss and being embarrassed by it. I was perpetuating the cycle of shame and isolation. Because my hearing loss is genetic, I worried that I might have passed it on to them. I needed to do a better job modeling how to live well with hearing loss.

Peer Support Helped Me Feel Less Alone

I began volunteering at hearing loss charities and for the first time, met other people with hearing loss. They understood what it was like to be exhausted at the end of a long day of listening and to dread socializing in large groups. Many of them had once felt alone with their hearing challenges too, yet now they inspired me with their successful and abundant lives. There were musicians and teachers and business people living with purpose and joy. They gave me hope that I could do it too.

I began disclosing my hearing loss and teaching my friends and family the best practice communication tips we use today for good conversation. My children were watching me still, but this time they were learning how to survive and thrive with hearing loss should either of them develop it too.

No Need to Face Hearing Loss Alone

How do you find hearing loss peers? Many people with hearing loss live in smaller cities or places without organized hearing loss organizations. One silver lining of the pandemic is increased access to hearing loss support.

When chapters and other local groups could no longer meet in person, they created online meetings and webinars which attracted people from across the globe. No longer were we limited by our geographic location. We could reach across state and country lines to learn and share with one another.

In one such recent meeting, I was a panelist for an online discussion sponsored by the  International Federation of Hard of Hearing Young People or IFHOHYP.  Entitled Life after Deafness: Remembering, Rebuilding, Reimagining, the seminar focused on adjusting to a life with hearing loss, with a special emphasis on handling hearing loss in the workplace.

The participants joined from across the world — different time zones, languages, and varied degrees of access to hearing loss services and support. But we shared one thing, our desire to learn from one another. The main takeaway from the event: When you have hearing loss, you are not alone. In fact, we are all in this together.

Social Media Aids Hearing Loss Connections

How can we find one another? One easy way to dip your toe into the water is online.

  • Seek out websites related to hearing loss or blogs like this one where you can gather information and real world advice from others like you.
  • Attend a webinar or online meeting and connect with the speakers or other attendees that seem to share your experiences. There is usually a very active chat where people share contact details and other useful links.
  • Join a Facebook group or two. There are many, each with its own personality and focus area. Try a few to find the ones that work for you.

There is no need to struggle alone with your hearing loss. The power of shared experiences can help you rebuild confidence and develop new skills to enhance communication. You may also make some new friends along the way. I certainly did.

Readers, what helps you feel less alone with your hearing loss?

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16 thoughts on “Have Hearing Loss? You Are Not Alone

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      I have not. Anyone else? Thank you for your question.

  1. Katherine Bouton – New York – Katherine Bouton is the author of "Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss." (2018) available at Amazon.com in paperback or ebook. It updates and amplifies the now-out-of-print "Living Better with Hearing Loss." Her first book, "Shouting Won't Help," tells the story of her hearing loss and her bumpy and sometimes hilarious journey to acceptance. She is a former editor at and contributor to The New York Times. She served for seven years as a member of the Board of Trustees of the Hearing Loss Association of America. She is immediate past President of the New York City Chapter of HLAA. Her blog can be found at katherinebouton.com. She has had idiopathic progressive bilateral hearing loss since she was 30.
    Katherine Bouton says:

    Thanks for your honesty, Shari. This is very moving.
    One good place to interact with and learn from others with hearing loss is the Hearing Loss Association of America. Our New York City chapter (hearinglossnyc.org) offers informative, interactive, free, captioned meetings once a month, currently by Zoom. Our next meeting is April 6 from 6 to 7:30 PM and features the renowned psychologist Michael Harvey talking about the psychology of hearing loss. You can get a link to the meeting by writing to info@hearinglossnyc.org and asking to be notified.
    Another excellent group is ALDA, the Association of Late Deafened Adults.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Excellent! Thank you for sharing this information.

  2. I have gained a great deal from this group and I feel supported by other peoples strategies in managing their hearing impairment. Although I was told I would eventually lose my hearing completely at age 30 until I became profoundly deaf at 70 I never prepared for it or planned what I would. Audiologists mainly talk about the level of your hearing but say nothing about preparing you for what happens. Very little advice or direction was given about how to live and I needed to talk to other people who had experienced the same thing.
    I knew nothing about the new technology that would help me communicate in a certain degree, nor was I given full information about Lions Hearing Dogs and the benefits of putting an application in as quickly as possible due to a long waiting list, realising that all people will not understand and I needed to tell people I was profoundly deaf now but as they knew I had been going deaf for many years just continue on to talk to me even though I would say I was profoundly deaf now. It wasn’t until I wore a large badge which I had printed for me because I felt I was reinforcing my disability every time I had to tell someone. I wear it outside the home at all times. The badge reads “I am Profoundly Deaf”. People have been more understanding and helpful since wearing the badge and if people don’t see the badge straight away I can just point to it. Some people then make an effort to speak clearly to me which helps because I find lip reading to be difficult with some people.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      So glad you are a part of this group! Thank you for sharing your thoughts.

  3. Great advice Shari, I’m a member of a couple of Facebook groups which has helped but I think I’m ready now to be more involved. Maybe an online forum or maybe a local community group; will check it out.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Great! Glad to see you are getting more involved with the community. Thanks for your comment.

  4. I saw audiologist and after 4 tries said, it’s not the hearing aid. It’s you ability to hear which is beyond my expertise. I’m 90 +…. cochlear implant maybe my only alternative. I’m waiting on appt. with ENT. Wondering if another kind of aid are made. No hearing in left ear. Lost hearing due to virus, but aging has taken its toll , too.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Sounds like meeting with the ENT is a great next step, especially if your hearing loss is quite profound. Thank you for sharing your experiences with us.

  5. Since having a form of Diplacusis for 12 years I’ve never met anyone else with the same condition. I found the most help on this web site: https://hearinglosshelp.com. Questions were answered better than any audiologist in person. Hearing aids made it worse and I believe led me to also experience Recruitment, although they help me now with speech recognition. I had to give up my carrier as a piano technician, pianist, organist, and teacher. My son took over the tuning and rebuilding business and I continued with quiet work on player pianos dealing with leather, cloth, refinishing etc. The problem is growing and seems to be caused by pharmaceutical drugs, acetaminophen, and most pain relievers. Our doctor has taught us to eat right which has enabled us to no longer need relief from medication, but it’s to late to cure hearing loss. I do not attend any gathering using a PA system because the distortion is so bad I cannot understand what is being said plus it’s too loud or soft. Since most people have not heard of Diplacusis it helps to explain what it sounds like to you because of the many variations. If I hear someone playing an instrument it sound as though they are striking all the notes at once. A choir sounds like they are randomly yelling whatever not comes out of their mouth.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Thank you for explaining more about it. I hope you can connect with others who experience the same thing.

  6. Be sure to check out hearinglosshelp.com I saw him mention it above and checked it out. So much info!! I bought a neckloop that it says I can plug into my phone or computer and hear in my aids!! Of course I do have tcoils in my aids, but I bet lots of you do too. It also talks about putiing a personal loop in your house. and I haven’t even looked at the other info yet.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Thanks for sharing.

  7. People tel me that I should learn sign language. My response to this is always the same, “who am I going to talk to!?” It’s not going to help me get thru my day to day struggles or my frustration when announcing that I’m hearing impaired, have it “acknowledged” then have the person turn around and continue talking to me!!! So frustrating and yes, lonely.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      It is frustrating, especially since the vast majority of people with hearing loss do not sign. Reaching out to other people with hearing loss helped me feel much less alone. Thank you for sharing your perspective.

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