Understanding Our Patients’ Perspectives: My Mom’s Experience

Although my mom wasn’t diagnosed with hearing loss until her early thirties, she’d always experienced some hearing difficulties. After recovering from ear surgery at a young age and multiple ear infections throughout her childhood, she was no stranger to ENTs. However, getting an ear infection as an adult—an infection that ultimately led to her hearing loss diagnosis—wasn’t something she expected.

As a future audiologist, it’s important to understand our patients’ perspectives. I’ve supported my mom throughout her hearing loss diagnosis and journey. Recently, we dove into a discussion about her personal experience which culminated into 3 main stages: grief, anxiety, and self-advocacy. We’d like to share her perspective with you . . .

Grief

In her thirties, my mom was shocked to wake up one morning with aural discharge, or otorrhea, on her pillowcase—her eardrum had perforated due to an infection. After the ear infection healed and her eardrum closed, she went for a checkup with an ENT. The in-house audiologist performed a hearing test and told my mom she had a low-frequency sensorineural hearing loss. This was a shock because a more common diagnosis among individuals her age is high-frequency sensorineural hearing loss.

My mom’s diagnosis was unrelated to the ear infection and was likely something she’d been living with for years. Her hearing loss was permanent and to make matters even more difficult, hearing aids wouldn’t really work for her low-frequency hearing loss. You see, while the technology for hearing aids has developed over the years, it wasn’t an option for her at that time. Following the audiologist’s recommendation, and not yet experiencing any communication difficulties, my mom decided to forego the hearing aids.

Following the diagnosis, she was overcome with grief for a permanent hearing loss that she hadn’t expected. She said that until that time, “medicine had always had my back.” She’d never encountered an instance in which a health care provider informed her that something medically wrong with her couldn’t be fixed. Now, she was being told there was no cure for her hearing loss—and there really didn’t seem to be a promising treatment or solution. At that point, her hearing loss wasn’t really impacting her day-to-day routine, so she accepted its permanence.

Fast forward 18 years: My mom began struggling to hear. She started to feel left out of conversations, as though she was on the outside looking in. It made her wonder, “What am I missing that I don’t realize I’m missing?” As a second-grade teacher, other teachers would come into the classroom and make comments like, “What’s that humming noise?” My mom had no idea there even was a humming noise. Instances like this led her to inquire about hearing aids again.

Anxiety

Reflecting back, my mom shared with me that she remembered feeling a lot of anxiety when she began working with an audiologist again. Years earlier, doctors told her that hearing aids wouldn’t work for her type of hearing loss. She was scared that they’d tell her the same thing this time around, too. That anxiety and fear impacted her ability to be open to something new.

But, after a hearing evaluation with the audiologist, my mom decided on her first hearing aids, which were custom-molded, in-the-ear hearing aids. As soon as she put them on, she knew they weren’t for her. They made her feel like she was underwater, and she returned them within a month.

A few years later, my mom’s communication difficulties worsened. She was having more difficulty hearing and was also unemployed. She felt lost. Those circumstances—combined with her struggles to communicate with others—led to increased levels of stress, anxiety, and depression. She decided to try again and consulted with another audiologist.

As this audiologist worked with my mom to select and fit her with new hearing aids, he explained his plan to reach out to others within the field to find the most appropriate hearing aids for her hearing loss. My mom was full of anxiety but had a strong desire to hear better. She was shocked when he called her a few weeks later to tell her she could come to pick up her new hearing aids—a new type of hearing aids that she hadn’t encountered before, known as receiver-in-the-ear hearing aids. This time around, that feeling of being underwater was gone. She recalls being able to hear the smallest of sounds—like the refrigerator running—yet the person speaking to her was louder but unclear. These hearing aids still weren’t the right fit.

Self-Advocacy

In total, my mom tried hearing aids three different times—sometimes, she’d wear them daily; other times, wearing them sporadically. She said she felt like they didn’t give her the clarity she needed to improve her communication. So, she decided to focus on advocating for herself in social situations more. She’d ask others to talk louder or slower, or to simply face her when they speak . . . but it can quickly become exhausting having to continuously expand your energy advocating for yourself in these social situations.

I’ve watched countless times as family, friends, and strangers try to communicate with my mom and fail because they aren’t practicing good communication strategies. Conversation is a two-way street. Ensuring that you have your partner’s attention and are speaking clearly are keys to successful communication. I never want someone to go through the struggles my mom has faced or to deal with the communication barriers that she encounters daily.

Watching her go through these situations had a huge impact on my decision to become an audiologist. I’ve learned so much from my mom about hearing loss and how to help people communicate better. I’ll always keep her experience in the back of my mind as I work with patients and in my daily life.

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