What We Wish Our Loved Ones Knew About Living with Hearing Loss
As someone who has lived with profound hearing loss in one ear for many years, I am all too aware of the challenges that come with not having access to full sound. Beyond my own experience, my work as a hearing loss coach and advocate means I connect every day with others navigating their own hearing loss journeys.
Everyone's story is different. People have varying degrees and types of hearing loss, some live with tinnitus or hyperacusis, and others have balance issues. Over the years, I’ve learned that while the level of hearing loss matters, other factors like personality, hobbies, social circles, and careers also shape how deeply hearing loss affects our day-to-day lives. Yet, despite how individual the experience can be, there are also common threads that many in the hearing loss community can relate to.
This article was inspired by a touching conversation with a client during a coaching session. They had recently been diagnosed with hearing loss and were beginning to navigate their new reality, figuring out where to sit in restaurants, how to advocate for themselves in public spaces, and how to adapt. While they were proud of their progress, one thing remained hard: helping their loved ones truly understand what living with hearing loss feels like.
They had shared a few things with their friends and family, like the importance of getting their attention before speaking, but didn’t want to “go on about it.” They worried about becoming a burden. Even though their loved ones were kind and supportive, they still felt alone. This conversation stirred something in me, not because it was rare, but because I’d heard it many times before.
It can be difficult to put the experience of hearing loss into words. It’s not just about reduced sound. It’s about the emotional, social, and mental impact as well. So, I asked members of the hearing loss support group I run—a group for people with all types of hearing loss, many of whom have experienced sudden loss in one ear—a simple question:
What do you wish your loved ones knew about living with hearing loss?
Here’s what they shared.
Please Don’t Say It Doesn’t Matter
Above all, the most common response was how upsetting it is when, after asking someone to repeat themselves, they reply with, 'It doesn’t matter.'
“When I don't hear what you have said and ask you to repeat yourself, please don't say, 'Nothing,' or 'It doesn't matter,' as I find this very hurtful. It makes me feel excluded and like a nuisance,” said Carry.
“I feel exactly the same,” said Lynne, “and the worst culprits are my partner and family!”
2. Asking for Repetition Is Frustrating for Us Too
Constantly having to ask others to repeat themselves can be emotionally draining and can impact our confidence in social situations.
“It's just as frustrating for us as it is for you when we don't hear or understand you. It's embarrassing to have to ask people to repeat themselves. Sometimes it’s easier to just withdraw from conversations,” explains Sue.
3. Background Noise Makes Communication Difficult
If you don’t have hearing loss, you may not realise how easily everyday sounds can interfere with hearing clearly.
As Cheryl explained, “Background noise and layers of noise make it harder to hear, so speaking as you walk off, from another room, whilst running a tap, or listening to music presents its challenges.”
4. Living with Hearing Loss Isn’t Necessarily Quiet
Hearing loss doesn’t always mean just a reduction in volume. For some, it's far from quiet. Conditions like hyperacusis (increased sensitivity to everyday sounds) and tinnitus (a constant perception of ringing, buzzing, or hissing sounds in the ears or head without any external source) can make the experience of hearing loss far more complex and overwhelming.
As Susan shared, “The hyperacusis, along with my constant 'roaring generator' sound in my ear (tinnitus), is overwhelming. Certain things are like nails on a chalkboard, clanking silverware, rustling through a junk drawer, doing dishes, vacuuming, the lawn blower outside, the high screeching of a baby crying, ice coming out of an ice maker, a screeching door or drawer that needs to be oiled, etc, etc, etc!”
“With hyperacusis, too, certain sounds are very uncomfortable to my deaf ear (plastic, cutlery, tin foil, crockery), which people tend to forget,” added Cheryl.
Mary explained how her sudden single-sided deafness has brought with it a range of unexpected and unsettling sensations beyond just silence:
“To be fair, I didn't know any of this, either, before it happened to me. Going deaf in one ear isn't just as simple as 'it is silent in one ear, but otherwise everything is normal because I can hear out of the other ear.' Wish that it was that simple! It's really more like this (at least at first, although things have settled down for me now): The deaf ear isn't just sitting there quietly and unnoticed. There is ringing and tinnitus while it 'protests' the sudden void. If I'm in a very noisy environment, there is buzzing as the ear is bombarded with sound, and the ringing intensifies. The whole ear also feels numb, and there is an uncomfortable 'full' feeling. I almost feel like I've been hit in the side of the face in a boxing ring.”
5. Your Support Means the World to Us
Living with hearing loss often requires constant adjustments, not just for the person experiencing it but also for those around them. While hearing loss can feel isolating at times, the understanding and patience of others can really make a difference.
“My husband has been especially helpful in large gatherings and will make sure people move so I can sit in the right place. He will joke about it to help people not be annoyed that they have to move, but it also reminds everyone of my situation and that he wants me to be able to be involved in conversations!” explained Susan.
Debbie shared how everyday tasks and health challenges, on top of her hearing loss, become more manageable when those around her take the time to be patient and flexible.
“For me, I will also say that confusion is added to my day while trying to figure out where noises or voices are coming from; it’s very distracting. When I combine all the adjustments I have to make and add them to other health issues, like managing ADHD, SAD, vestibular migraine, and other particulars of Meniere’s, I really rely on others being patient and understanding with me. My husband is also kind and caring and is working on giving me ample notice to prepare for our scheduled outings or to work at home. Rushing me never works out very well!” said Debbie.
For Rosemary, lip reading has become an essential part of communication. While her family is supportive, small habits from others, even well-meaning friends, can still make things more difficult. “I count myself very lucky that my husband and family put me first in seating arrangements and repeat if I do not hear in the first place. Saying that, one good friend still insists on talking with her hand in front of her mouth, and I hate having to say, ‘Please, can you move your hand?’ Or sometimes it's her coffee cup, ‘as I can't see your lips.’ I rely on lip reading a lot with reduced hearing in what I call my partly working good ear and no hearing in the right ear,” she explained.
6. Why “Just Use Your Good Ear” Isn’t That Simple
For those of us with single-sided deafness, having one “working” ear doesn’t mean hearing is easy or normal. In fact, relying on one ear can create its own set of challenges, from difficulty locating where sounds are coming from to sensory overload, fatigue, and frustration in noisy environments.
“It’s not as easy as, you’ve got another ear to use. It’s really hard to work out where sound is coming from,” said Cheryl.
Mary shared what it’s like when her “good” (hearing) ear is left to do all the work, and how that can create a completely different kind of hearing struggle:
“The good ear isn't just hearing like nothing's wrong, either. It is also suffering a trauma because it suddenly has to do the work for two, and it becomes hypersensitive to sound. Some noises don't make sense as the brain tries to sort this all out. So, while the ear technically still hears normally, it is overwhelmed with stimuli to the point where noise can be painful to hear. And while the good ear hears, it suddenly can't triangulate what it is hearing, so some sounds seem to come out of nowhere. All of the above makes me feel jumpy and on edge. Even though no actual pain is involved, this feels like a physical trauma, and my hearing is NOT normal just because one ear still works. Yes, I can hear what you say—I'm not totally deaf—but my one ear doesn't function alone like two ears do, and noisy environments are stressful and tiring.”
7. Living with Hearing Loss Is Tiring
It can be physically and mentally exhausting to live with hearing loss. Constantly concentrating, lip reading, filtering out background noise, and trying to make sense of speech can lead to listening fatigue—a type of tiredness that can build up throughout the day.
“Lots of noise is draining, and I need to take breaks now and again,” said Cheryl.
Even with a strong support system, the daily effort to simply stay engaged can wear people down. Lauren shared how that hidden exhaustion affects her:
“I have been lucky in that my family and co-workers have all been very supportive. However, people who don't have invisible disabilities, I feel, don't fully understand the exhaustion at the end of the day—in our case, the listening fatigue—that comes from trying to just keep functioning on a daily basis.”
8. The Emotional Impact Is Tough
Hearing loss isn’t just about our ears; it can deeply affect our emotional well-being, especially when we’re constantly navigating listening fatigue, overwhelm, and the grief of change.
“One of the biggest things about hearing loss that I wish others understood is how emotional and overwhelming it can be because of hearing overload, listening fatigue, and just being plain tired by the end of a work day. Many emotional and crying days for me. It doesn't seem that anyone can understand that,” shared Susan.
Cheryl, who has hearing loss in one ear, added, “Emotionally, hearing loss is hard, and you can’t help worrying all the time about maintaining the hearing in your good ear and also thinking about what it was like when you could hear normally. It’s a massive change and takes a long time to adapt to and try to come to terms with.”
9. Please Don’t Forget
Though hearing loss is an "invisible disability," its impact is real. The challenges we face may go unnoticed, yet we still need support.
“It’s a joy when people remember my hearing loss as it’s an invisible disability and no one would know—they generally don’t—so it’s me who ends up placing myself on their hearing side, asking if I can sit in a particular place in a restaurant,” explained Cheryl.
Patti also touched on the emotional strain of constantly having to remind others of her needs, and the frustration that comes when her efforts aren’t acknowledged:
“It would be nice if our loved ones (and liked ones!) could remember that we are disabled. I am constantly reminding people in my life that I can't hear them. Because I look normal and act normal, they tell me that I seem ok, and they forget. This is hurtful for me because they have no idea how much work I am doing to converse. It feels like a wasted effort sometimes… If they can't meet me halfway, then why am I trying so hard?”
For Margi, the emotional impact of her hearing loss has changed her social experience:
“I dearly appreciate when folks reach out and simply ask what, if anything, they can do to help me be more involved again! It’s somewhat like a death. Folks are reluctant to bring it up for fear of upsetting me, when the reality is that we live with it every second of every day. There’s no way to forget that I’m now deaf.”
10. Hearing Aids Don’t Restore Hearing to “Normal,” the Way Glasses Can Correct Vision
While hearing aids are a valuable tool for many people with hearing loss, they don’t work in the same way that glasses correct vision. Hearing aids amplify sound but don't restore “normal” hearing. They help, but challenges like noise, background sounds, and clarity are still difficult.
“Turning up the hearing aid turns up all other noise as well and not just people's voices,” explained Sue.
Gail describes how hearing aids can help balance noise, but don’t fully resolve the challenges of understanding speech, especially in noisy settings:
“I have lost most of the hearing in my right ear. My left ear is normal, but I really struggle in noisy places. I now wear a hearing aid in my right ear. People still come to my right side (bad ear) and speak quietly or whisper, thinking I can hear because of the hearing aid, which isn't the case. It helps balance the background noise out but doesn't make voices clearer.”
11. We Want You to Take Your Hearing Health Seriously
Often, people don't think about hearing health until something goes wrong. Those of us with hearing loss understand the importance of prevention and early intervention and want to help others avoid the same struggles.
“Personally, one of the most difficult struggles I find with hearing loss is trying to explain to people how important it is that they look after their own ears and not take them for granted. Whenever I speak to someone who says, at times, they feel a slight ringing or itchiness in their ears, it’s hard not to get serious about telling them the importance of getting it checked out.
We know better than anyone how often ears are overlooked even in health assessments, to the point where many people don't realise the benefits of knowing where their local hearing clinic or ENT is located, as it could make the difference in an emergency situation,” explained Kasim.
12. There Are Surprising Silver Linings
While hearing loss brings its challenges, Cheryl reminds us that it's not all negative. For many, living with hearing loss can lead us to become more resilient, provide opportunities for growth, and even open doors to new experiences and meaningful connections. As Cheryl shares, there are moments where her hearing loss provides unexpected benefits, and she’s found ways to embrace the positives:
“I get a fabulous night's sleep if I sleep with my good ear on the pillow—I can sleep through anything! Whether I hear or not, I can choose not to, and we’ve had some hilarious situations when I’ve misheard people! Oh, it’s also useful if I don’t want to go to something or perhaps I shouldn’t confess that!
“On a serious note, I have met some wonderful people and gained new friends, and we all support one another. It’s also made me far more empathetic as I can relate so much better to what people who have disabilities have to deal with. I also volunteer to help others with hearing loss,” shared Cheryl.
A Way Forward? More Awareness is Key to Better Communication
Living with hearing loss touches every part of life, from how we communicate to our emotional well-being, and it affects our loved ones, too. More awareness and understanding can improve communication and help build empathy.
Margi encourages open communication, saying, “I encourage that dialogue and try to teach the people around me to get my attention when they speak and to look at me as well.” Such simple actions can go a long way in making someone with hearing loss feel more included and engaged.
Representation also plays a crucial role in building awareness. Aleida recalled a moment when a TV drama depicted a bomb going off, leaving the character hearing only deadened sounds and loud ringing. The person she was watching TV with remarked, “That’s so annoying,” to which Aleida responded, “That’s exactly what I hear 24/7.” The exchange highlighted how limited understanding can be until others are able to experience the reality firsthand, even if only briefly. As Aleida said, it made her companion more understanding, a reminder that direct representation, even in fictional media, helps open eyes to what it's like to live with hearing loss.
Aleida shared her appreciation for a website she used to help others experience different types and levels of hearing loss, as well as tinnitus, before it was taken down. "It was, hands down, the best way to help someone understand what the world sounds like for me now," she explained. Aleida believes that more tools like this are essential for bridging the gap in understanding. Mary agrees, noting the value of sharing the experience and believes that using a hearing loss simulator with friends and family could be incredibly beneficial. "Tools like these help others put themselves in our shoes, even if just for a few minutes, offering a glimpse into the challenges of hearing loss and tinnitus." For anyone curious about what the experience might sound like, here are a couple to explore:
Hearing loss simulator: https://www.haidtechnology.com/hearing/hearing-loss-simulator/
Tinnitus simulator: https://www.thetinnitusclinic.co.uk/about-tinnitus/tinnitus-sounds/
Are you living with hearing loss? Can you relate to any of these points—or is there something important I’ve missed? I’d love to hear your thoughts in the comments.
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If you need support in explaining your hearing loss to loved ones or navigating any part of your journey, I’m here to guide you. Book a free call to explore your options!
