Sometimes it feels like audiologists are from Mars and their patients are from Venus. Audiologists want to sell hearing aids, but people with hearing loss want complete hearing solutions. Audiologists have limited time to spend with each person, while consumers have a large number of questions. For audiologists, hearing loss is all in a day’s work, but for us, it is a life-altering and emotional experience.
How can we get the two groups on the same page in order to provide a more productive patient experience for both? I hope that by sharing my hearing loss journey, we can take steps towards doing just that.
My Hearing Loss Story
My hearing loss story began in my mid-20s when I was a graduate student. The school used only the case method, so class participation was key to your understanding and to your grade. Even so, when I arrived the first day of class, I was more nervous about being able to see the blackboard from my assigned seat in the last row of the amphitheater, than I was about hearing my fellow students.
My worry had been misplaced. 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.
Two years later, I moved to New York City, began my career, got married and settled into a fulfilling professional and personal life. 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. 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.
Getting the hearing aid molds made was frightening. I had never put anything into my ears before, let alone filling them to the brim with a self-hardening gel. My audiologist was gentle, but it was painful. As the gel hardened forming the mold, all sound receded leaving only pressure and fullness. Was this how wearing hearing aids felt? I went home and cried.
I hated my hearing aids 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.
As my hearing loss worsened, I needed to wear my hearing aids more and more, but sometimes I did and sometimes I didn’t. It was beginning to take a toll socially. For friends I could hear well, I was always available, but for the ones that I could not, I made excuses. 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. Over time I began to request quieter tables at restaurants and to use captioning devices at the movies. Soon I grew bold and even rearranged the entire seating arrangement at last year’s Thanksgiving dinner table so I would have a more hearing-friendly seat. I refuse to let my hearing loss isolate me. It is hard work, but it is worth it.
Recently, I have turned to advocacy, joining the boards of two leading hearing organizations — Hearing Health Foundation and Hearing loss Association of America. I even started a blog, LivingWithHearingLoss.com, where I share my hearing loss journey and tips that I have found helpful along the way. I hope that by sharing my story, I can help others to live more comfortably with their own hearing loss.
My Audiologist Experiences
For most people, an audiologist is the first hearing care provider they see. This was the case for me. The tone and outcome of that first visit is critical in setting the individual down his or her hearing loss path.
I have visited 4 audiologists since that first appointment back in business school. Only one ever asked me about my lifestyle and what hearing situations were most important to me. Only one (a different one) tested my hearing with my hearing aids on to make sure they were working well for me.
None of the audiologists ever suggested I find a support group for hearing loss or provided information on scientific research being done in the area. My care was always transactional, focused on the purchase of a hearing aid rather than on solving my hearing loss problems. At least that is how it felt to me.
I do not mention this to complain, because I have done quite well with my hearing aids since accepting my hearing loss and have my audiologists to thank for a lot of that. I also do not want to minimize the effort and hard work of the audiologist community, but I do think it is important to provide the patient’s perspective.
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 audiologists will consider incorporating these suggestions into their patient care routines.
- Focus on the person, not the product. Each patient is unique and may have different priorities for what he or she wants and needs to hear more clearly. Taking the time to ask him about his life could uncover important information that leads to a better and more complete hearing recovery plan. Is he working? Perhaps a captioned phone would be helpful. Does he want to go to the theater? Be sure to include a T-coil in his aid. These small details can make quite a difference.
- Supply a written summary of the visit with detailed follow-up instructions. Your patient may be missing important details about her care but is embarrassed to ask you to repeat them. Ask her follow up questions to make sure she understands. A written summary is incredibly helpful. Ideally, this would include test results, what they mean, and a list of recommended action items for care. Providing a written summary does not need to be time consuming if you use a simple checklist format that is filled out real-time during the appointment. A written record may also cut down on follow-up calls for clarification by family members.
- Welcome us with open arms. It takes the average person 7-10 years to seek treatment. Don’t let your receptionist scare them away! Hearing loss holds such a stigma for many people. It can be heartbreaking to acknowledge it. Be sure that staff is welcoming, polite, and easy to understand over the phone.
- Offer a full range of product options. Hearing aids are not enough to restore communication in all circumstances. Stay up to date on innovations that can help your patients more successfully watch TV, attend a lecture, or enjoy a dinner out at a restaurant. Technology is changing rapidly and is very confusing for patients such that your guidance will be highly valued. You might consider hosting small technology classes after hours on occasion to see if they are well attended.
- Think outside the device. Hearing loss impacts people’s lives in so many ways. Hearing aids and other devices alone are not always sufficient to restore one’s life back to “normal.” Provide information in your waiting area or on your written summary sheet about local support groups like Hearing Loss Association of America. Stay up on hearing loss research that you can share with your patients. If you treat the whole person, they will send their friends your way.
- Make your office hearing loss friendly. Is your reception area looped? Do you provide written instructions for payment and other functions in addition to verbal explanations? Does your receptionist speak slowly and clearly while looking at the patient? Patients are here because they cannot hear well. Make sure your office resonates with respect for their condition.
- Understand that hearing loss is fraught with emotion. Acknowledging and treating one’s hearing loss is a big step for many people. Compliment your client for taking charge of his hearing and taking steps to enable a more connected life. Encourage him to continue along the journey with a positive and can-do attitude. Your compassion will go a long way to ensuring that the hearing aids don’t end up in a drawer unused.
- Set realistic expectations. When I first got my hearing aids I expected them to solve all my hearing problems right away, and of course, they did not. It takes persistence and work to fine-tune the settings and to retrain the brain to hear in this new way. Be sure to 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.
- Share tips and tricks of the trade. Those new to hearing loss may not understand how to ask others to help them hear better. Share some of your secrets. 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. Perhaps your favorite tips could be printed on the back of your appointment summary sheet.
Readers, what is on your audiologist visit wish list?
This article originally appeared in Audiology Practices’ June 2016 issue. It is reproduced here with permission.