Big birthdays breed reflection and so it was a few months ago that I realized I have had hearing loss for almost half my life — probably longer since it often takes time for someone to notice their own hearing problems. I’ve been using hearing aids for less time — it took me a while to come out of my hearing loss closet — but I now wear them with pride. I am grateful daily for the help they provide, even if they are far from perfect.
While my hearing loss presents constant challenges, looking back, I realized it has also taught me so much. I share those lessons with you below. Please share your thoughts in the comments.
1. You hear with your brain, not with your ears.
This means that auditory fatigue is a critical factor in how well we hear. It also explains why people with hearing loss may have trouble remembering information that is presented orally or learning new words. People with hearing loss are expending significant brain processing power simply to listen, meaning there is less brain capacity available for other activities.
2. There is no need to suffer alone.
Hearing loss is difficult to understand until you have lived it yourself. Find other people with hearing loss with whom you can commiserate, share tips and find solace. Hearing loss friends provide wonderful support, especially on a particularly difficult hearing day. Over time, my hearing loss friends and I discovered that we have much more in common than our unsatisfactory ears. I am inspired by all they achieve, despite their challenges.
3. Self-advocacy is the key to success.
Don’t be shy! If you don’t ask for the assistance you need, it is unlikely to be forthcoming. Hearing loss is an invisible disability so you must self-identify. Get comfortable with declaring your hearing loss publicly and asking for the help that you want. The more specific you can be in your requests, the better the results are likely to be. You can practice on strangers first if you feel more comfortable. Once you find the right words, advocating for yourself will become part of your everyday routine.
4. Hearing aids alone are rarely enough.
Unfortunately, hearing aids are not like glasses, meaning they will not restore your hearing to normal. While hearing aids amplify sounds, they do not make them sharper or clearer. In fact, in settings with a lot of background noise, hearing aids sometimes do the opposite. Explore assistive listening devices, hearing loops and captioning alternatives to help you navigate these challenging situations. With the advent of OTC hearing aids, our choices will only widen. Stay current on advancements to glean the most benefit.
5. Hearing loss is exhausting.
When you have hearing loss, listening requires effort which can take a toll on your energy level as the day progresses. Once you know this, you can factor in listening breaks as needed and schedule important conversations for the morning, when your brain is fresher. Even with proper pacing, by the end of a long day of listening, I often crave only peace and quiet. Don’t beat yourself up for it — it is part of the experience.
6. Squash stigma right away.
My father had hearing loss but rarely disclosed it because of the stigma. He eventually distanced himself from his friends and family for fear of discovery. When I first noticed my hearing loss I was devastated, because I had learned that it was shameful and something to hide. What a waste of time! Once I got over the stigma, I felt free. The expectations I had set for myself to hear everything perfectly fell away, and with that, a lot of stress.
7. Those closest to you might disappoint you.
It hurts when your friends and family forget to use communication best practices, especially after you have reminded them for what feels like the umpteenth time. It is frustrating when they neglect to get your attention before speaking to you or talk to you with their hands covering their mouths, but we have to learn to forgive. Because our friends and family are with us the most, there are more opportunities for them to get it wrong. Try to focus on what they are doing right, but accept the fact that you will need to remind them over and over again.
8. You can lead a full life with hearing loss.
You may need to use workarounds, but hearing loss should not hold you back from achieving your goals or enjoying your life. Despite my hearing loss, I practice yoga, enjoy outings to the movies and the theater, converse with friends and family, raise my children and engage in meaningful work. You can too.
Readers, what have you learned from your hearing loss?
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File under very sad loss: After 24 years I had to stop folk dancing. There is simply no way I found around it. I couldn’t always identify the tune and music immediately in order to begin the expected dance steps. So still learning to adjust.
So sorry Susan. That is a shame. What if you connected the music to your hearing aids directly via a loop or bluetooth?
Doesn’t work. Either the connection is lost or I cannot hear it clearly enough.
I love to dance,too, Susan. I go to Jazzercise classes because the instructors are up on stage, facing the class, with state of the art microphones. I can see what they are doing and hear their cuing over the music. I was even a Jazzercise instructor for 7 years, beginning at age 53 ! Now that I am in the classes, I enjoy the music even though I can never understand the lyrics to new songs. The exercise is great for my mood and self-esteem, and socializing with others in the class keeps me connected. I hope you can find a way to dance in your life. You deserve to enjoy it for so many reasons!
Good suggestions! Thanks for sharing them.
That doesn’t work for the type of dancing I had done. Enjoy yours!
The time taken for someone who is gradually losing their hearing to “come out” about it is sadly evidence that stigma about hearing loss and hearing aids still exists.
Sadly, true. Thanks for adding your thoughts.
I’ve been wearing hearing aid for 39 years now, and can definitely agree on how exhausting listening can be! Thanks for all your great articles. I’ve been sharing many of them on FB to help increase awareness!
Thanks for sharing Susan and for adding to the discussion.
Hearing loss is exhausting. I try and tell family and friends that the processing of words and sentences goes a little slower for the hearing loss person. We process ‘hear the word’ ‘brain process’ ‘is that the correct word ‘. ‘Context in the sentence’ etc. Seems like a long time and I think I generally have a strange look on my face trying to be sure of what I think I understood was said and what actually was said. 🤪 I tell people upfront of my hearing disability now.
It is always good to be upfront about your hearing loss. Thanks for sharing your experiences with exhaustion.
I lost all high frequencies as a toddler with the remainder of my hearing gradually diminishing over the years. I wore HAs for 40 years before getting a cochlear implant in January of this year. I live in a state of fatigue and have been this entire century. Thankfully I’m a “master” lip reader as it’s what saving me as I learn to hear electronically. All people sound like a scratchy record with R2D2 whistling over their shoulders. I can 100% relate to every point you made in your blog.
Congratulations on the CI. My friends with CIs tell me it is a lot of work to get up and running, but then it is a life saver. Wishing you a speedy ramp! Thank you for sharing your thoughts.
I received my first cochlear implant in 2005. My second in 2009. Patience and practice are key. One of the ways I practiced was with books! Using unabridged audiobooks, I would follow along with the paper version. It taught me what the words were supposed to sound like. Your library may have books on cassette or other media you can borrow. Hang in there! People don’t sound like Mickey Mouse (or R2D2 in your case) forever. The gaps between speaking and hearing also disappear. I am a RN and hear all I need to hear through my implants. 🙂
Good suggestion! Thanks for sharing it.
Thank you! I am reading with Audiobooks while following along on my Nook. I love this form of rehabilitation. I also listen to talk radio when driving and am discovering I’m hearing more and more words and phrases every day. You’re right…practice, patience, perseverance!
Since I need to lip read I often feel the emotions that goes with a person’s words. Example, when someone talks about their pain or suffering, most people with normal hearing tend to look away. But I need to see their face to hear, and study their body language and movements to understand what they are saying. In doing this I feel like I am hearing on a different level.
That is so true! Thank you for sharing that insight.
Definitely exhausting hearing loss. The lip reading and piecing together what you don’t hear into logical information for your brain to process and make some sense of kind of defeats the purpose having an enjoyable conversation with someone or a group . So as a result, I think many hearing impaired people tend to avoid social situations because they are so exhausting !!! My eyes are definitely my ears , but the eye strain is aging them faster . Can’t win .
It is definitely more work, but with good communication best practices and technology, it is getting easier. Don’t give up, communicating and connecting with others is such an important part of life. Thank you for sharing your thoughts.
It is especially frustrating to tell family over and over again that I can’t hear them in certain situations! Come on how many times do I need to say it? Then they get frustrated with me!
I agree! But what can we do? Thank you for sharing your thoughts.
Hearing aids only work when you do not have ear infections😞
That is true. Any type of ear infection, allergies, or even a cold can impact how well you hear. Very frustrating. Thank you for sharing your thoughts.
Hello Brenda, I experienced infections for many, many years and when I eventually had to use hearing aids I could only use one – the perforated ear which gave all the infections (because needs to be kept dry ) was left open . I couldn’t hear anything in it. I have at long last received a PAIR of aids – BTE with moulds.
Where the old type with the dome stops air circulating through, the moulds have a air duct ,so I can install them for many hours before getting “sweaty”.
No infections now plus my total hearing has improved immeasurably.
Superbly written, young lady. I posted it to my FB wall, in hopes that all of those people close to me will read it and perhaps understand, as I have been telling them these things for years about myself.
I am glad the post resonated with you and hope it will be useful for those close to you to read. Thanks for your comment and for sharing the post.
What has my hearing loss taught me? The positive – patience, forgiveness of self and others, the ability to be okay with silence and ‘inner listening’; to look for physical beauty everywhere as soothing to the eyes and the spirits; to tune in to a person and listen with my whole being and not just my ears; to be gentle with myself; to let go of the stigma and realise that others’ ignorance of how excluding deafness is says more about them than it does about me; that it’s okay to not feel I have to be a deaf ambassador all of the time – it gets tiring too! And how blessed I am with friends who do make the effort to include me in conversation. I cherish and keep up with those who level the playing field of communication.
The negative – too much isolation through being excluded when others are happily chattering away is corrosive to the soul. The solution – Seek out more considerate people! And cherish them.
Well said! Thank you for sharing these insights.
I am a 25 yr old who has been deaf and dealt with hearing aids since age 7. All these years since I have struggled with exhaustion. For a long time I never realized it was my deafness. I went to a mainstream school and never had connections with others like me besides a family member or two to talk about our experiences. I used to wonder what was wrong with me, and and doctors could find nothing out of the ordinary when I brought up my exhaustion. Now I know better, and I’m relieved to have found this blog and other people who know the exhaustion. It can be hard for my loved ones, friends, and acquaintances with normal hearing to understand what I mean when I repeatedly say how tired I am. I still struggle with exhaustion, but it helps knowing where it is coming from and that I am not alone.
I am so glad you found this community. You are definitely not alone. I wonder if your audiologist could give you the name of others your age with hearing loss in your area. Connecting in person with others in your same situation might be a great help to you as well. Thank you for sharing your experiences.
Shari,
I agree with all 8 of your points. But the one that causes the most frustration, anxiety and hurt is #7 that Nan addresses earlier. You would hope that if you had any type of disability that your friends and family would be the first ones to support you. But it is not the case because of the invisibility of the handicap. After 10 years of hearing loss and getting no support from home, I discovered HLAA by going to a convention by myself. It was an eye opening experience to find so many people who were living the same life as I and it is what lead me to retire early and spend a good chunk of my ‘retirement’ volunteering for HLAA and advocating for all of us HOH’s. It also has given me a lot of tools to bring home for my family to learn. Thanks for all you do with this blog.
Mike
Thank you for all the work you do advocating for people with hearing loss.
Your article and all of the posts were very helpful. Most people I am around are considerate most of the time. My husband is bad about turning away from me when he is talking. I have to keep reminding him. I do tend to close myself off because it is so hard .
It can be frustrating, but try not to close yourself off. The reminding is frustrating, but also worth it because communication is so important — both for your health and your well being. Thank you for sharing your thoughts.
After 40 years of marriage my wife still believes that I can lip read through the back of her head or through walls! Still, I smile and say “Dear, I need to see you….” Even audiologists and ear doctors forget to look at their patients. Smile, remind him again, and keep yourself connected. I learned long time ago that closing myself off is far worse.
Good advice. Thanks for sharing it.
Shari, I commented earlier on this article, but I would like to tell you how much I appreciate the blog and articles you write. I’ve worn hearing aids dince 2004 and it is the best $$$ I’ve spent. Of course I wished they weren’t so expensive but I worked a 30 yr career and thankful I can afford them. Thank you Shari for bringing such pertinent information to the hearing disability and letting us know ‘We are not alone’.
Thank you for your kinds words. I am so glad you find the blog helpful.
Shari, this is another really well written article. You have the ability to put into writing exactly my thoughts and experiences. Thank you so much.
I have plans to be bold and embrace Deaf Awareness Week here in the UK in May. As a parent and teacher it’s time I set the best example I can. My approach is pragmatic, positive and supportive.
I shall share and make good use of this article.
Thank you.
Good for you! Thanks for sharing your thoughts.
Excellent writing as always! Long ago, I learned this little ditty…..”Money attracts friendships….adversity distinguishes them….” So true with this and life’s other maladies. If a person is honest and open, there is always someone who’ll make all the difference, usually not whom you think it might, or will be! For me and many others, Shari, you ARE that person!
Thank you for your kind words! That is so nice. Thank you also for being a part of this community.
Shari, Isolation, for me, is the dark angel of hearing loss. Yet there are times when I welcome her as the lesser of two evils. Silence versus noise. Pease versus the struggle for understanding. But it goes deeper than that. I’ve only been treating my hearing loss since 1997. I have, for as long as I can remember, always felt on the fringes of group conversations. There is, of course, no way to check this out and there could be many reasons for this but I might have always had a hearing disconnect of some kind. And this could have been more behavioral or developmental than organic. The part that I remember is the feeling that I was being “talked over” as though I were between two people who knew what the subject was and I didn’t. My contributions often seemed to be irrelevant or at best, slightly off point. It may not mean a thing but my favorite place as a child was in the crown of an oak tree or in my secret loft. Liking to be alone may be the innocent truth of it, but there it is for consideration. Perhaps I am looking for things that are not there.
When real time profound deafness was added to this history there were the makings of some serious, perhaps unconscious ground in expectations when experiencing group discussions. I have found that confirming a statement is often the solution to understanding as well as participation, as in – “Are you saying the price was wrong or the purchase itself?”. What I heard was not definitive, but asking such a question could get to the point easily. It can make conversation kind of clunky but it also can clear up a lot of misunderstanding and keep one in the center of things. It’s more to the point that just asking, “What?”.
The thing is, hearing loss is a constant struggle. It’s a major feature of one’s life and there is something to learn from it every day.
Very true. Thanks for sharing your insights.
I was born with hearing loss, so I understand the feelings of isolation. I also have hyperacusis, so I understand the desire for silence. In my 20s my balance started to go. I’ve spent the past 25 plus years with chronic vertigo. This brings on isolation on a higher level. It’s my experience from hearing loss that motivates me not to let my vertigo isolate me even further.
Isolation is such a common thing with hearing loss. I’d love to read more on how each of you deal with it.
I thought falling a sleep after a days work was my age after reading this article I no what it is, 9 months after middle ear surgery and waiting for ear aids to be fitted. Very good article, thank you.
Thanks for sharing your experiences.
My first husband had hearing loss at a young age but that was decades ago and unfortunately there weren’t any devices available to help him.
Technology has improved markedly which is so helpful! Thank you for your comment.