I recently spoke at Beyond Hearing Aids, a symposium sponsored by HLAA-NYC, the NYC Walk4Hearing, and NYU/Wagner. In the audience were audiologist and speech language pathologist students from several local universities. It was a wonderful session full of informative talks on OTC devices, hearing loops, cochlear implants and advocacy. I was pleased to share the patient’s perspective.
I share an excerpt of my remarks below.
Thank you for inviting me to talk to you from the patient’s perspective. I want to tell you a little bit about my hearing loss journey, some of my experiences with audiologists over the years, and then I will share my audiologist visit wish list – a list of ten things that patients want from their audiologists. I hope that it will help inform the decisions you make as you develop your own practice over time.
My Hearing Loss Story
My hearing loss story began in my mid-20s when I was a graduate student. Fairly quickly into the first semester, I began to miss things in class — a comment that was made under one’s breath or as an aside. Sometimes the class would erupt in laughter and I would be left looking around the room trying to figure out what had been said. My seatmate was growing weary of my repeated, “What did she say?”
I knew what the problem was. I was losing my hearing. My father developed hearing loss as a young adult, as did his mother. I was hoping it would skip my generation, but no such luck. I was entering a path from which there is no escape — and one that had destroyed my father’s happiness. I was scared.
I went to get my hearing tested. I don’t remember much about that first audiology appointment, other than the result — mild hearing loss. I was told it was too slight of a loss to do anything about, but that I should monitor it. I was relieved, and because it wasn’t too bad, I ignored it, preferring denial to action.
But as the years passed, I noticed that I was having trouble hearing in meetings and that there were certain clients at work and friends socially that I was starting to avoid — the ones I couldn’t hear well. It was time for another hearing test.
As I suspected, things had gotten worse and this time it was recommended that I try hearing aids. I was devastated. The stigma surrounding hearing loss had been very strong in my home growing up, such that my father eventually became isolated and withdrawn as he tried to hide it from everyone. This experience was impacting how I felt about getting hearing aids. I knew that I needed them, but wanted them to be as small as possible so that nobody would know.
I purchased hearing aids, but I hated them and avoided using them as much as possible. At work, I would sneak them in before an important meeting and rip them out as soon as possible thereafter. I always hoped the telltale squeal would not give me away. I was following in my father’s footsteps of shame and isolation.
But then I had children of my own and everything changed. Since my hearing loss is genetic I worried that I might have passed it onto them. I didn’t want them to see me hiding my hearing loss and being embarrassed by it. I needed to teach them how to survive and thrive with a hearing loss, in case one or both of them developed the condition. I had to accept my hearing loss. So I did.
I started wearing my hearing aids all the time and working to educate my family and friends about how they could help me hear them better. I began to request quieter tables at restaurants and to use captioning devices at the movies. I refuse to let my hearing loss isolate me. It is hard work, but it is worth it.
Recently, I have turned to advocacy serving on the board of Hearing Loss Association of America and writing a blog called LivingWithHearingLoss.com. I hope that by sharing my story, I can help others to live more comfortably with their own hearing issues.
My Audiologist Visit Wish List
What is it that hearing loss patients want from their audiologists? Each person may have a slightly different list, but here is mine. I hope you will consider incorporating these suggestions into your patient care routines as you develop your own practice.
1. Acknowledge the patient’s hearing loss story. Some stories are traumatic—others less so—but every patient has one. Ask us why we are there and listen to the answer. Your attitude and response has a big impact on the likelihood we’ll continue treatment.
2. Provide hearing accommodations at your office. Remember your patients are there because they are having trouble hearing! 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 system, a simple pock talker-like device or other assistive listening technologies for your office.
3. Focus on hearing solutions specific to the patient. Be sure to ask about your patient’s priorities for hearing better. Do they work and need a captioned phone? Do they have trouble hearing in meetings or one on one at home? Attend the theater often? Dine out frequently? The more you know, the more appropriate solutions you can offer. Most often the best solution will be a combination of hearing aids and other things.
4. Incorporate hearing assistive technology or HAT. New devices are constantly being introduced to help people with hearing loss watch TV, enjoy dining out or attend a lecture or live performance. Stay current on innovations to better integrate these items into your patient’s hearing loss tool kit. HAT can be confusing. Train your receptionist and others in your office on how to work these devices so they can help train your patients. Pre-printed sheets for common devices with images and step-by-step instructions would be very helpful for your patients.
5. Supply a written summary. Your patient may be missing important details about her care but is embarrassed to ask you to repeat them. Include test results, what they mean, and a list of recommended action items for care. A simple checklist format will save time and reduce patient follow-up calls for clarification.
6. Set realistic expectations. Everyone wants hearing aids to work like glasses – you put them on and suddenly your hearing is back to normal. But we all know it doesn’t work that way. Be sure to explain to your patients that it will take persistence and patience to fine-tune the settings and to retrain the brain to hear in this new way. Set realistic expectations and explain the work and time that will be required by both the audiologist and by the hearing aid wearer to get things working smoothly.
7. Share tips and tricks of the trade. Those new to hearing loss may not understand how to ask others to help them hear better. While tips like getting the attention of the person first, and keeping the mouth visible are obvious to you, they may not be to someone new to hearing loss or to his family and friends. You could print your favorite tips on the back of the written appointment summary.
8. Include the family. This is probably most important at the first appointment. I remember bringing my then boyfriend (now husband) to my first appointment. It helped me feel like he was in the battle with me and helped him to understand what we would both be dealing with. Hearing loss impacts the entire family so be sure to include them in the solutions. Everyone will need to make adjustments. Involving the family in care brings a higher likelihood of compliance and success
9. Embrace the hearing loss community. Unless you have hearing loss, it is really hard to understand what it is like. Suggest the patient meet other people with hearing loss through a local HLAA chapter or similar group. It made a huge difference for me. There was now a group where I could commiserate about my frustrations and learn useful tips to help me hear my best. And make friends. A strong community for your patient supports better hearing and increases the likelihood they continue with their treatment.
10. Be a hearing health ambassador. Not only are you budding audiologists, but you are also ambassadors for hearing health more generally. Counsel your patients to protect the hearing they still have. Be an ambassador for hearing health wherever you go – loud restaurants, concerts, etc. You can make a huge difference for others who may not know to protect themselves.
Readers, what would you add to this list?
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I would add that you are amazing. And required reading for every person who leaves a hearing test and is told that they (or a dear one) have hearing loss. You have already helped me so much on my journey. I , too, recently aquired hearing aids, and have been open and up front about them (for the most part) from the get go (once I finially accepted and “owned” my impairment). But YOU taught me that that owning it is not enough. Reading your words taught me the importance of self-advocacy! And I thank you for that priceless lesson.
So glad you are practicing self advocacy! Thank you for your kind words.
Love your blog, so happy to connect with other hearing impaired folks after 7 years of being a hearing aid user. It can be frustrating at times. My biggest beef is with loud restaurants; it’s difficult to find a quiet nook these days. All the points you mentioned are spot on. Thanks!
So glad you found our community! Thanks for being a part of it and sharing your thoughts.
I only recently discovered your Facebook page, and find your blogs interesting and helpful. I was diagnosed with mild hearing loss 15 years ago at the age of 35. I thought I had a clogged up ear but went to an audiologist (who happens to be my sister!) and she was the one who broke the news to me. After various testing (cat scan included), my ENT concluded it was either caused by some sort of nerve damage or genetics. I started wearing hearing aids maybe 2 or 3 years later—and I hated them. They were the all in the ear kind. I eventually stopped wearing them until my sister introduced me to the newer models that go behind my ear and I have worn them ever since. I liked your one blog where you told people “I’m a little bit deaf”. I’m not ashamed to tell people I have a hearing loss and wear aids. What bothers me is that people think I’m deaf. I actually had someone tell me that my speech sounded really good. I’m old enough now to ignore such comments. I’ve been dealing with new problems lately. What I thought was tinnitus (I have a buzzing or crackling in one ear) may actually be a muscle spasm. A new ENT ordered a CT scan and discovered I’m missing the bone between my brain and the semicircular canal (I forget the technical term) bilaterally and that is what caused my hearing loss. I was most likely born with it. I have now moved on to an even more specialized ENT and just had an MRI of my head. I don’t have the results yet but hoping to find out that this buzzing can hopefully be fixed. I just find for someone with hearing loss suffering with any form of tinnitus is cruel and unusual punishment. I’m fortunate to have family, friends and coworkers who support me and don’t mind me saying “what?” over and over again. Thank you for your advocacy and I look forward to your future posts/blogs. Sorry for the long comment!
So glad you found the blog and that you are so comfortable with your hearing loss. Thank you for sharing your story. It helps all of us to know we are not alone.
I wrote a paper a few years ago on what it was like to have single sided deafness and I was asked if it could be shared with Audiologists graduating in the future from a local university as they don’t often come across with someone with my type of hearing impairment. (One ear works great- the other one holds up my glasses..) And my impairment differs from someone with deafness in both ears… For example… I can’t read lips per se.. but if I can’t hear you clearly, I depend on watching your mouth form the words so I can guess if you said frog or dog……
One of my WORST experiences though, was with a SPECIALIST years ago. He walked out from his narrow hallway and called out something…a name? to the 3 people in his waiting room and immediately turned on his heel and walked away! Besides myself there was a young teenage boy and his mother. Neither one of them moved so I realized he MUST have said my name and I jumped to my feet and struggled to catch up. He was talking away with HIS BACK TO ME AS HE WALKED DOWN THE NARROW HALLWAY. I had NO hope of hearing nor understanding anything he said! And this was a hearing specialist? Then he motioned to a chair and plopped a pair of headphones on my head and still continued to talk! I’d never met the guy before and I had to remove them and ask him to repeat everything he said. Maybe he was embarrassed but it seemed to me that he was put-out having to tell me his instructions again. Because of his indifference…. I never went back.
That sounds awful. So sorry that happened. Thanks for sharing.
I was not aware that hearing loss can be genetic. However, growing up I was the only one in my family with hearing loss — still am. All through school I was afraid of being treated different and tried to “hide” it. I got my first pair of hearing aids when I was 6 years old. To this day I have not learned what caused my hearing loss. I was born with it, and it’s called nerve deafness. One theory my dad shared with me years ago was this: as I was being born, afterbirth got into my ears, causing damage. I should have looked into it, but never did. I look forward to your blog each week.
It is often difficult to get a full medical explanation for the causes of hearing loss. Thank you for sharing your story.
How do you get captioning at movie theaters?
Check out this post for the details. https://livingwithhearingloss.com/2017/02/28/you-can-go-to-the-movies-when-you-have-hearing-loss/. Hope this helps!
Thank you
I went and had my hearing tested at SAMS club mostly as a show of support for my daughter. She’s 12 and has been wearing hearing aids since she was three. It’s a goal of mine to be accepting and proactive about changes in my own hearing because I think to deny it would be really offensive to her. So I went to SAMS for the free test and found that I have lost some hearing at certain frequencies, but I’m not yet ready for amplification. I noticed that the audiologist was really annoyed that he had to speak loudly during a phone call that interrupted my appointment. I was pretty stunned. You’d think, of all people, an audiologist would be prepared to accommodate someone with hearing loss. Apparently not all are willing and that sort of ignorance shouldn’t be accepted by patients.
I love that you are being proactive about your own hearing! While many audiologists are respectful, there is certainly always room for improvement as evidenced by your experience. Thanks for sharing your story.
I have just found you. The comments sound just like me. It brings tears to my eyes to find people that actually understand what you go through. Thank you!
Welcome to the community! I am so glad you are finding it helpful!
Shari
Thanks for a great list. My first audiologist sold me hearing aids with a t coil but never explained them or turned them on. Thankfully I learned about the wonder of T coils and loops at an HLAA convention that a friend dragged me to. Now I am fully engaged with the local HLAA chapter. YEAH HLAA
Les Greenberg
HLAA Prince George’s County MD
So glad you connected with HLAA. They are a big help! Thank for sharing your thoughts