Last month I stood in front of a room full of PhD-level hearing scientists and told them what hearing loss actually feels like from the inside — something they spend their careers studying but that many of them may never fully experience.
These are the people studying the hair cells, synapses, and biological machinery of hearing—the researchers whose work may one day lead to treatments and cures that people like you and me can only dream about. For one hour, my job was to describe the reality they are working so hard to change.
The Gap I Wanted to Close
It’s hard to understand what hearing loss is like, even if you research it or work with patients all day. It’s hard to understand even if you live with someone who has it. Hearing loss is invisible, and so much of the experience — the listening fatigue, the mental gymnastics of filling in missed sounds, the sting of “never mind” — happens where no one else can see it.
So I told them. I explained that for us, hearing and understanding speech is the task — not something that happens in the background. I described the flood of emotions that comes with hearing loss — frustration, embarrassment, shame — and how those emotions often shape whether we succeed or struggle. I shared my experiences with my father, and my children, and the MindShift that changed my life. The talk included clips from We Hear You so they could hear these truths from other voices, too.
And then I told them the most important thing: their work matters more than they may realize.
What I Hope They Carried Back to the Lab
Research is our path to better treatments, future cures, and a deeper understanding of hearing loss. It also fuels the next generation of technology that can make communication easier while we wait for those breakthroughs.
Science can be a long, lonely road. Experiments fail. Grants get rejected. Late nights blur together. So here is what I asked them to remember: every experiment they run, every unsuccessful attempt, every grant proposal — it all connects back to someone like me. Someone trying to hear their child. Follow a meeting. Understand their doctor. Laugh at the joke everyone else already got. Someone trying to stay connected to the people they love.
Hearing research isn’t ultimately about ears. It’s about people.
What They Gave Me
What struck me most wasn’t their scientific curiosity. It was their human curiosity. They wanted to know what it actually feels like to live with hearing loss — not just how it works biologically.
Their questions were thoughtful and generous. Several scientists told me they had never heard a patient describe daily life with hearing loss before, and that it changed how they thought about their own work. Some asked how to better support family members with hearing loss. Others wanted to know what technology improvements would matter most in real life.
Standing in that room, I felt something I wish every person with hearing loss could feel: hope. There are brilliant, dedicated people working on our behalf — right now, in labs all over the world. They may never meet us, but we are the reason for their work.
To every hearing researcher out there: thank you. We appreciate you, and we are cheering you on.
And to my fellow travelers on the hearing loss journey: science tells us how hearing works. Those of us living with hearing loss can help explain why it matters. We need both if we’re going to build a better future. So if you ever get the chance to share your story with the scientific community, take it. Our lived experience is a form of expertise — and it belongs in the conversation.
Readers, what would you tell a room full of hearing scientists?
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Dear Shari,
Thank you for being our advocate. I am so glad to hear that the audience took the time to understand our needs and listen to what you had to share.
I am incredibly grateful for all the advances being made on our behalf—your post brought tears to my eyes.
Best regards,
Nancy Raney
The students are amazing! Thank you for your comment!
Thank you so much for sharing the personal side of hearing loss with scientists!
I had the good fortune to talk to an introduction to audiology course at a university here in Boston. It was fantastic to be able to spark the human curiosity in them. I think the first-hand accounts are something that’s just as valuable as the coursework they’re doing.
I agree! Thank you for your advocacy!
This is a truly powerful perspective on the importance of connecting scientific research with real-life experiences. Hearing loss affects so much more than the ability to hear sounds, and understanding its emotional and social impact is essential. It is encouraging to know that researchers are listening directly to people who live with hearing loss every day. Thank you for sharing such an inspiring and meaningful experience.
Thank you for your support of these efforts.