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what it feels like: the silent struggle with hearing loss
6 minute read
anne marie went ahead with her first cochlear implant in march of 2023 and then had the second one a year later—“life-changing” steps.
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for a lot of people, their hearing aids end up in a drawer because they don’t find them all that helpful—or they don’t want to wear them for fear of being associated with having any kind of disability.
this was the situation for anne marie langlois who has lived with hearing loss for as long as she can remember. the 55-year-old alliston, ontario woman was born before newborn hearing screen was introduced, and it wasn’t until a public health nurse came into her school for hearing tests that her hearing loss was discovered at age six. “she noticed that i was reading her lips, so she detected that my eyes were sort of scanning up and down and so she covered her mouth, that’s when they figured it out. i had made all these adaptations on my own,” she explains.
as a child, she had started speech reading, the appropriate term for reading lips and facial expressions to follow conversation.
she has vivid recall of the operation done soon after, common at the time, to put tubes in her ears because she had wax buildup. it didn’t help, but she was used to coping and carried on. in her 20s, she started having ringing in her ears, known as tinnitus, and she was referred to an ear, nose and throat specialist. he explained that her auditory nerve was sending a message to her brain to say ‘i’m not hearing well’ and her brain answering back in a loop (not medically verified but a good way for her to “wrap her brain around” what could be happening). he also told her not to focus on it so her brain wouldn’t magnify the sound.
basically, she had a hearing problem. but in her 20s, she felt that she wasn’t missing out on anything. by her 30s, she went to an audiologist for further testing and hearing aids.
getting used to hearing aids takes time and tweaking
“my hearing loss was such that it was moderate at the beginning and so i could still hear quite a bit of speech included without them, but with hearing aids, there’s an acclimating period of about six weeks,” she says of getting used to a particular type and brand to determine if they’re working for you. unlike glasses, where the frames make you look different but they don’t make you see differently, hearing aids have some uniqueness. you need time to build up the tolerance for the sound that you have not had throughout a period of your life.
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here’s the catch, she says: “what people don’t understand about hearing aids is they don’t make things clearer, they make things louder. and unfortunately, they make everything louder.” while they’re life-changing assistive medical devices, you have to work with your audiologist over time to customize them.
anne marie had worked in human resources her entire career, and she admits that throughout her 20s, 30s, and 40s, she was “trying to add layers that would allow me to not have to identify as having a disability” even though her hearing loss was progressing. she didn’t want to be stigmatized or fear impacting her job. so, her hearing aids were often abandoned in her desk drawer. she wanted to hide her hearing loss from others.
the bigger problem is, if left untreated, hearing loss can lead to cognitive decline and increase the risk of frailty, falls and depression. on the other hand, a 2024 study in the lancet healthy longevity, found that hearing aids may boost longevity, if they’re used regularly. the benefit was attributed to hearing aids allowing people to stay socially connected, remain more active or have reduced risk of falls.
“in my 40s, my hearing got really bad so when i was having a conversation without closed captioning, i would read lips, watch facial expressions, mirror your facial expressions and count syllables. and i’d keep in mind the context of the conversation, so that whatever i missed, i would fill in.”
challenges of the pandemic and a new life in advocacy
when the pandemic hit, the mask protocols made communication that much harder for everyone, and put anne marie into a tailspin. she had qualified for a cochlear implant back in 2019, but felt she wasn’t ready to take that step. unlike hearing aids that amplify sound, cochlear implants are small electrical devices that stimulate the auditory nerve through electrical signals. they work for people with severe hearing loss who no longer benefit from hearing aids.
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work colleagues who knew about her hearing loss encouraged her to wear her hearing aids and rallied for workplace accommodations, like moving meetings from high-ceilinged rooms where sound rises to other rooms with lower ceilings so that anne marie could better participate. she gradually got to a place of acceptance of her hearing loss, which rippled throughout her workplace so that others with hearing loss came forward to ask for accommodations.
in 2021, she decided to take time off. she connected with the canadian hard of hearing association patient advocacy non-profit association and later applied for a role within the organization. she’s now the manager of programs and services with a focus on education and inclusion. because once people embrace their hearing loss as a part of who they are, they can empower themselves and build community with others that understand what they’ve been through. her “messy middle” of hiding her disability moved forward to pride and confidence in herself as someone with hearing loss, helping herself and others. the association offers resources and mentors for individuals and groups to learn more about living with hearing loss and support to navigate care.
anne marie went ahead with her first cochlear implant in march of 2023 and then had the second one a year later—“life-changing” steps.
“i hadn’t heard a bird since my 20s, so when i got my first implant, as soon as spring hit, i was out in the backyard just listening to birds.” the simple things are often the most beautiful.
she says people were concerned for her when she decided to go ahead with it, thinking that she’d be overwhelmed with the loudness of the world. but the implants bring clarity of sound without distortion. they’ve worked well for her in every way, including her hair. she changed to cut to opt for a bob with one side shaved that shows off her implant “adornments” as she calls the external parts of the device. (it’s also an easier haircut for menopause, she says.)
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connection in the community can be empowering
“i’m always looking for teaching moments and opportunities to connect with other people. i remember a month ago i was out with my sister-in-laws for lunch and someone came by. he politely interrupted and said, ‘i hope you don’t mind, but my daughter has one too,’” she recalls of the man admiring her shaved side and confidence to show the world she had a hearing device.
“the support you find in the community is second to none.”
for others who have hearing loss, she’s all about encouragement to get help and improve your hearing.
“you don’t know what you’re missing,” she says. “it really does take an entire team, so open the conversation up with your family.” they supported anne marie when her hearing gradually degraded, recognizing the need for different hearing aids.
another important message is finding an audiologist you can build a strong relationship with. “if you’re not happy with the one you have, go find a different one. there are a lot of fabulous audiologists out there,” she says, adding the process of getting the right device and adjusting it over time is a partnership. “you have to share with them the type of environments you’re in, what you’re missing, maybe take in all your notes” to get the best aid for your own unique hearing ability. “we’re all different.”
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