“My name is Rachel, and this Deaf Awareness Week, I want to speak up. To remind others that hearing loss is more than silence – it’s a shift in how you move through the world. But it’s also possible to find your voice again, even beyond the silence.
When hearing loss becomes isolation
My hearing loss began shortly after intensive chemotherapy for Hodgkin’s Lymphoma when I was 17. Over the years, my hearing declined gradually, and without realising it I adapted by lip reading. I got on with life, studying music industry management, travelling, working and living fully. But I was always quietly navigating a world that wasn’t built for people like me.
Hearing aids helped, but not always comfortably. They made some beautiful sounds come alive again – birdsong, music, running water – but also overwhelmed me. My brain had to work overtime to process it all, so I wore them less and less. Lip reading and managing my surroundings became my survival tools.
As my hearing declined, so did my energy and my ability to cope with everyday life. Eventually, I stopped working. Not because I wanted to, but because I couldn’t keep up physically or emotionally. My confidence slipped away quietly, just like my hearing had.
Social situations became overwhelming. Tinnitus, sensory overload and exhaustion made even simple outings feel impossible. I began isolating myself. Sometimes it was my choice; sometimes it was easier for others not to include me.
Then I began losing my sight too.
My diagnosis changed everything
In February 2024, after decades of unexplained health issues and a lifetime of misdiagnoses, I finally received an answer at the age of 47: mitochondrial disease. I knew nothing about the condition, but it explained not just my hearing and sight loss, but everything I’d been dealing with since my teens.
Knowing what I was facing didn’t magically fix things, but it gave me something I’d been missing – clarity. Now, I understand why my energy is limited, why trying to hear is so exhausting, and how to better manage it. I’ve found support through specialists and through The Lily Foundation.
When my genetic counsellor suggested I contact the charity, I wasn’t sure what to expect. But from the moment I reached out, I was welcomed with warmth and understanding. I was invited to the Lily Adult Support Weekend and, although I was terrified – having withdrawn from society for years – I knew I had to go.
Despite my fears and a stressful journey, I was immediately met with kindness and surrounded by warm smiles and genuine support. I was overwhelmed – in the best way. For the first time in years, I didn’t feel alone.
I pushed myself to join in, and I’m so glad I did. I laughed, I made friends, and I felt part of something. Since that weekend, the weekly Lily coffee mornings have brought joy and connection back into my life. I’ve found my voice again, and with it, a renewed sense of confidence and hope. I’m so grateful to everyone at The Lily Foundation for helping me feel seen, heard and understood.
What deafness really feels like
Deafness isn’t just about not hearing. It’s about exclusion, anxiety, frustration and grieving the person you used to be. It’s the fear of guessing a conversation wrong. It’s the mental gymnastics of piecing together the world from body language and environment cues. It’s pretending to laugh along because it’s easier than asking for the third repeat.
But it’s also resilience. It’s creativity. It’s learning to build a life you love in a world that doesn’t always accommodate you.
Learning to adapt is a daily challenge. It’s about doing things differently, finding new ways to cope – and sometimes accepting that there are things I simply can’t do anymore. I try to stay calm, even in stressful situations, using breathing techniques to help me manage.
I can communicate quite well one-to-one if someone is facing me, we’re close together, and there’s no background noise. For example, sitting side-by-side on a bench, turned toward each other, works well for me. This is my preferred kind of interaction, and it’s where I focus my energy.
I hear my phone directly through my hearing aids. For TV, I can only watch alone, with my hearing aids in and subtitles on. It doesn’t work for live TV, so I simply don’t watch it. I’ve found I enjoy music best through headphones as it’s the clearest and most peaceful way for me.
I find peace in nature and gardening, where I can truly switch off from the world. Sometimes, I even forget about all my health issues. I love reading, and I’m able to do so thanks to the incredible accessibility aids now available for people who are partially sighted or blind.
If my sight goes completely, or if I develop more mitochondrial symptoms, I’ll adapt again. But for now, this is how my life works – and actually, I’m quite happy. I know things can change at any moment. Mito forces you to become a master of adaptation, and not just physically – the mental battle is just as real.
My message to someone newly diagnosed with deafness
Life is different with hearing loss, but you will find your way. So many people live rich, happy lives with deafness. It’s okay to feel scared. But you’re stronger than you think.
Let yourself feel the emotions, but try to respond positively where you can. Make choices that are best for you. Be confident in who you are. Speak up. Tell people what you need.
If you need time – take it. Write things down if you can’t explain them right away. Return to the conversation when you’re ready. I do this often. People can’t help if they don’t know what you need.
Don’t assume that hearing aids ‘fix’ everything. They help – but not always, and not for everyone. They can be uncomfortable and exhausting. Sometimes I wish mine were bright pink so people would see them and understand. Other times, I just want them to disappear. What matters most is what you feel comfortable with.
And if you’re struggling, reach out. Don’t be alone. There are people who understand and organisations who can help.
Hearing loss is a journey, and it keeps changing. Be ready to grow with it – and find new ways forward.
What I want to say to the outside world
Inclusion matters. I wish people wouldn’t treat me like I’m stupid just because I’ve lost my hearing. I wish people would make the effort to include me. I wish they wouldn’t talk over or about me, as if I’m not there just because I didn’t hear them the first time.
Make the effort. Just look at me and speak to me. There is still prejudice. Don’t exclude people with hearing loss just because it’s easier not to engage. Be kind. Be aware. Ask how someone prefers to communicate. Don’t assume.
Let’s start helping each other – proactively.
Let’s get involved and make real change.
And never, ever, make assumptions.”