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A space for real stories, honest reflections, and small victories from life with tinnitus and hearing loss.
Here you’ll find comfort, perspective, and maybe even a laugh or two as we learn to live a little more peacefully with that damn noise.
What I Wish People Knew About Tinnitus & Hearing Loss
By Marie
When people talk about hearing loss, they often picture silence. But that’s not my world.
I live with uneven hearing loss and tinnitus, so my world is full of sound. Some of it real, some of it imagined, all of it a little confusing.
Since all this began, I’ve started to notice the world differently. Not just because of the sounds, or sometimes the lack of them, but because of how people react when they interact with me.
This article isn’t about blame or pity. It’s simply a small window into what it’s really like, and what I wish people around me understood a little better.
1. It’s not just about “ringing” or “turning up the volume.”
Tinnitus isn’t just a faint background hum. Some days it’s a whisper, and others it’s a storm that fills every quiet space.
Tinnitus alone hinders my ability to hear voices clearly. It’s not that I’m actively listening to the tinnitus, it’s that the tinnitus gets in the way of me making sense of the world around me. It interrupts my efforts to follow conversations. It drains my energy.
And hearing loss isn’t solved by “just turning it up.” Louder doesn’t mean clearer. Sometimes it’s like every sound arrives wrapped in fog. Voices blur together, and the effort to follow along can be exhausting.
2. Silence isn’t peaceful for everyone.
For most people, silence means calm. For me, silence depends on how well I can manage my tinnitus.
The quieter my environment, the louder it feels inside my head. That said, I still love peace and quiet. I’ve had tinnitus for over half my life and most of the time, I deal with it well. But those who are new to tinnitus will sadly miss that feeling of real peace and stillness.
That’s why some of us play soft background sounds when others crave silence. It’s not because I don’t value calm, it’s because my peace sounds different.
3. It takes a lot of energy to listen.
When you have hearing loss or tinnitus, every conversation is hard work. I’m lip-reading, guessing, concentrating, filling in the gaps, and pretending it’s all fine.
By the end of the day, that constant focus leaves me mentally drained.
If I seem tired or zone out, it’s not that I don’t care. It’s that I’ve used up my listening energy.
4. Direction can be... confusing (and sometimes funny).
Because my hearing is uneven, profoundly deaf in my left ear and around 40% loss in my right, I can’t always tell where sound is coming from.
When someone calls my name and I can’t see them, it’s like playing an unannounced game of “Hide and Seek.” I’ll spin one way, then another, trying to look casual (but probably looking ridiculous) while clearly having no idea where you are.
Once, someone shouted “Hey Marie!” across the park, and I waved enthusiastically… at a complete stranger walking their dog. The person calling me was behind me, laughing. Moments like that used to frustrate me, but now I mostly laugh along. It’s part of the package. It's a mix of confusion, comedy, and learning not to take it too seriously.
5. Please don’t shout or *over-enunciate.
It’s a kind thought, and I totally understand why you do it, but it can make things harder. Shouting distorts sound and changes facial expressions, which makes lip-reading tricky. Instead, just face us when you talk, speak clearly, and be patient if we ask you to repeat something. You have no idea how grateful I am when you help me out in this way.
If I’ve asked you to repeat something a few times (and honestly, I probably give up before the third try), the best thing you can do is rephrase it. A slightly different wording can make all the difference.
Think clarity, not volume.
6. Don’t be the “Nevermind” speaking partner.
Having a chat is one of the most wonderful connections humans can have. Remember, communication is a shared effort. It’s not solely about me, just like it isn’t solely about you. We both need to try to make ourselves understood. I promise, I’m doing my part.
Please, whatever you do, don’t say “Nevermind” after deciding it’s not worth repeating.
It might sound harmless, but it stings when it happens time and time again. It quietly says, “You’re too much effort.”
The danger here is that I start to feel more and more worthless. Most of us would rather struggle through the noise than feel left out of the moment.
7. You don’t have to fix it. Just be there.
There’s no cure, no magic button to press, and that can make people uncomfortable.
But the truth is, I don’t need solutions as much as I need understanding. Sometimes, a simple “That must be tough” or “Thanks for telling me” goes further than any advice.
I often feel like a burden when I tell people I’m hard of hearing, but most people understand. They understand because they either know someone in the same situation or because they’re just kind. And most people, I’ve found, are kind.
8. I'm not fragile. I'm simply navigating life a bit differently.
Living with tinnitus or hearing loss doesn’t make someone weak or broken. Although I’ll admit, on a bad day, I might disagree with that.
It teaches resilience, patience, and a strange kind of acceptance. We can learn to find joy in the moments between the annoyance of the noise.
We have immense gratitude for the people who make an effort to meet us halfway.
Top Tips for Being an Amazing Speaking Partner
If someone close to you lives with tinnitus or hearing loss, your awareness can make a world of difference.
Here are some tips to help:
- Ask where they’d prefer to sit. I have a spot that helps me see better and figure things out more quickly.
- Face them while you talk. Visual clues are everything.
- When possible, choose places with minimal background noise.
- Don’t shout.
- Speak naturally, but focus on clarity. Give every word your attention. I often miss the first few syllables of a sentence, so I’m never sure if you’re asking a question or making a statement. Many sounds look similar on the mouth, so lip-reading isn’t foolproof.
- It’s not all about me — let me know what I can do to make our conversation easier for you too. Am I too loud or too quiet? I genuinely can’t tell.
Be patient. Be kind. Face me when you speak. And know that your willingness to listen, really listen, is the greatest gift you can give.
Over to you
Do you live with tinnitus or hearing loss? Or maybe you know someone who does?
I’d love to hear how you cope, what helps, or what you wish others understood better.
Your story might help someone else feel less alone. You can email here: marie.tinnotus@gmail.com
Take care,
Marie
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