I’ll never forget my first hearing test. I was in my mid-20s, in graduate school and terrified. My father had hearing loss, as did his mother, so the fact that I was getting a hearing test so early in life was not surprising. It was traumatic nonetheless.
My father felt ashamed of his hearing loss. He went out of his way to hide it by isolating himself from friends, family and co-workers. I remember parties where he would sit alone in the corner, watching and waiting for someone to approach him. At the time, I thought he was just shy. Now I experience hearing loss, too, and I know the truth. He was probably exhausted from trying to hear with all the background noise and decided quiet solitude was better than the embarrassment and effort of not hearing what others had to say.
My family unfair
My family’s lack of support didn’t help my father accept his hearing loss. My mother would sometimes whisper mean things to my sister and me behind his back. She’d tell us not to worry because, “He can’t hear us.” Her behavior taught me that hearing loss was shameful, embarrassing and something a person needed to tackle on his own, without help or emotional support.
Despite this backdrop, I approached my first hearing test like any other—I wanted to do well. “Was that a beep?” I asked myself over and over during the exam. If the answer was even a “maybe,” I pressed the button. “The patient was difficult to test,” it said on my audiology report, “due to a high number of false positives.” Perhaps I was trying to trick the test into showing that my hearing was fine. No such luck.
This was a long time ago. Now, I’ve accepted my adult-onset genetic hearing loss and I work to help others live fully with their own hearing loss. I became a hearing health advocate, and currently sit on the national board of Hearing Loss Association of America (HLAA). I also share the challenges and successes of my experience through my blog LivingWithHearingLoss.com.
Hear’s what patients want
Those difficult early years of experiencing hearing loss stay with me, however, and I’m not the only one. People with hearing loss remember their first visit to an audiologist’s office. They experience high hopes alongside great worry. Here are five things I—and other patients—want from audiologists during that first visit and throughout our care.
1. Acknowledge our hearing loss story. Some stories are traumatic—others less so—but every patient has one. Give all patients a little time to talk. Ask why we’re there and listen to our answer. Your response has a big impact on the likelihood we’ll continue treatment. Offering upbeat yet realistic expectations for what we can accomplish also helps us accept the diagnosis.
2. Provide accommodations at your office. Your receptionist should be welcoming and easy to understand, even over the phone. Speaking clearly and while facing the patient is critical. Consider investing in a hearing loop for your office. Not only does it show respect, but it can also be used to test the t-coil in your patients’ hearing aids. Provide a written summary of each visit including audiogram results and recommended action steps. This makes us more likely to follow your advice.
3. Focus on hearing solutions, not products. Be sure to explore your patient’s priorities for hearing better. Do they work and need a captioned phone? Attend the theater often? Dine out frequently? The more you know, the more appropriate solutions you can offer.
4. Keep up to date on hearing assistive technology. New devices are constantly coming on the market to help people with hearing loss watch TV, enjoy dining out and more successfully attend a lecture or live performance. Stay current on innovations to better integrate these items into your patient’s hearing loss tool kit.
5. Bridge a link to the broader hearing loss community. Your patient looks to you for answers. Explain the risks of untreated hearing loss, the latest scientific research and where she can go to learn more. Suggest the patient meet other people with hearing loss through a local HLAA chapter or similar group. A strong community for your patient helps support better hearing.
Denying his hearing loss significantly reduced my father’s ability to connect with other people—even family. I hope my insights as a hearing loss patient will help others avoid his challenges.
This article was originally published in The ASHA Leader. Reproduced with their permission.
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Shari, This is such an important column. I’m happy to see it was published in the ASHA Leader — audiologists need to know this as well as their patients.
Thanks Katherine!
Hello Shari. I agree so much with this – especially points number 1 and 3. As I am only 34 and have severe hearing loss only in one ear, I have been told by one audiologist, that i am not the usual ‘old person who has been having gradual hearing loss in both ears’. Audiologists need to know their patients story and about their ‘hearing hopes’ , to be able to know the best way to help them. Thank you for posting this. I am happy also to see it was published for audiologists to see. Take care. Carly
Thanks for sharing your thoughts Carly.
Hi Shari, I like all your good suggestions but one particularly caught my attention, was the one suggesting a written summary at the end of the meeting! Would like to see it have more emphasis in your blog! That is especially important after first appointments with the audiologist!
Your comment about too many “positive answers” on the hearing test strikes me because when I have tested with audiologists, in response to my question as to whether I should click on a beep if I’m uncertain as to whether I really did hear it, I’ve been advised to go ahead and click! Maybe things have changed since the test you are talking about here.
That is interesting about the extra positives. Thanks for sharing your experiences.
Thanks for this wonderful article. I have a hearing loss since childhood, and yes I was always embarrassed. People, especially young people/children can be so cruel. When I went for audiological exams, I too pressed the buzzer, not because I wanted to cheat, but there were times I actually thought I heard it. What really bothered me were the audiologists (not all of course) attitude. I actually saw an audiologist discuss my results with a receptionist, then laugh! Roll forward many years later, and I became a nurse. I gravitated to deaf /hard of hearing patients because I knew exactly what they were going through. Audiologists , I feel , need to be more understanding. My experience with them (and I have much experience since childhood), is not good. Hopefully, this has changed!
Thank you for sharing your experience and for the good work you are doing as a nurse to help other people with hearing loss.
I know this is a bit off topic but you say that you are a nurse, I am studying (just starting) to be a veterinary technician and I have concerns about how my hearing loss will impact my acceptance into the professional program. Would you mind emailing me so I can get some perspective on how your hearing loss has affected you being a nurse? It would be greatly appreciated. Jennifer_mcmican@yahoo.com
Hi Jennifer…..I would be very happy to share my experiences , which are many, with you. Expect an email soon.
Thank you Shari. These points need to become standard fodder in the hearing loss treatment discussion. The main takeaway for me is that audiologists need to focus on client needs more and less on HAs. Of course there are times when these things constitute the primary effort. However, ALDs can be as important as hearing aids in producing a satisfying listening experience. It’s a multifaceted effort and some solutions are less profitable than others. The arrival of OTC hearing aids will, I believe, go a long way toward re-focusing the entire industry, while creating an environment of permission for people reluctant to acknowledge their hearing loss.
Well said, Jerry. I agree. Thanks for sharing your thoughts.
A very good article. Thanks Shari. I was a bit amused by the notion of your desire to ‘do well’ on the hearing test resulting in false positives. That definitely resonated. While I am not in the slightest bit embarrassed by my hearing loss, and make no effort to hide it, I want to do well when tested (any kind of test), leading I’m sure to false positives. Why? Maybe I’m just type A and want to excel at everything. One other point about what people want (or should want) from an audiologist, namely objectivity. My sense is that some audiologists are too closely partnered with a single hearing aid company. When that happens their advice is not necessarily in the best interests of the patient.
Great point. Thanks for sharing your advice.
Thanks for a great story that should be required reading for every audiologist! I’ve seen audiologists now for over 60 years – and never has one suggested HLAA as a resource. They assumed that since I’d worn a hearing aid since the age of 5 and was reasonably well adjusted – that I was more of a role model. Consequently when I DID finally get involved with HLAA with the attitude that “I wanted to share my lifetime of experience with newly diagnosed hearing loss people” I was sadly mistaken about how little I really knew. My first convention was a California State Conference in 1996 and I was completely overwhelmed by how much I had to learn. ALDs were completely new to me, and once I found them, I felt liberated! This whole topic deserves its own blog about the lack of or very inconsistent aural rehabilitation. Thanks for all you do for us!
Thanks for sharing your perspective and insights Mary!
Mary,
I remember what an office assistant told me, “yeah, you’ve been wearing hearing aids long enough…” Yes, I’ve wearing hearing aids for 5 years (at the time). But I only know what you’re willing to share with me. I didn’t know about Tcoil up until 5 years…which has changed my life as a lot of my friends and family have gotten married in venues that have loop/tcoil. I also live in GR, MI. Which to my knowledge, is the only airport with loop.
THANK YOU so much for writing this! I am 28 and got my first pair of hearing aids more than a decade ago. No audiologist/hearing aid fitter told me about t-coil and I really needed custom fit molds (instead of domes). It wasn’t until I went to Costco (of all places) where I felt I was truly listened too and got a great product that fits my lifestyle and needs–that was 4 years ago (so, I waited 7 years? Pretty pathetic)
Glad you have what you need now! It is important to stay informed as technology changes rapidly. Thanks for sharing your experiences.
Re: “Consider investing in a hearing loop for your office.” Shari, you’ve written that as an option! How about ‘Invest in a hearing loop for your office’?
Great one! Thanks.
I have moderate/mild hearing loss in both ears (depending on frequency), and I realise it’s not bad compared to a lot of people who come by my audiologist..
…but I’m a teacher, and I can’t hear my students across the table. I can’t hear if they’re saying yes or no when I do name call at the start of the class – sometimes I just write that they’re present even though I have no clue. I can’t talk to my colleagues in the office without walking over and standing next to them. When people go “I don’t like using the microphone and I don’t know how to switch it on,” I’m out of the loop for the rest of the meeting.
So maybe a piece of advice should just be that even though the hearing loss isn’t “that bad” compared to others the audiologists see – it IS that bad to me.
Thank you for sharing this. Hearing loss, no matter how “mild” has a huge impact on our lives.
I am a young audiologist. Thank you for making this post. It is really interesting to see a hearing appointment through the patient’s eyes.
Glad you found it helpful! Thanks for reading.