When Silence Screams: The Deaf Reality of Tinnitus

The moment the anaesthetic hit my veins, the silence didn’t soften. It detonated.

Not a ring. Not a hum. Not the tidy “buzzing in the ears” that leaflets reduce it to. This was chaos, raw and merciless.

Bells clanged, metallic and furious, like church towers collapsing in my skull. Numbers were barked into the dark; five, seventeen, eighty-eight; an invisible bingo caller rattling through my brain. Music shards collided, not one song but eight, mangled into a chorus that mocked sense itself. And underneath it all: a baby’s cry, shrill, endless, cutting through every other sound like a blade.

The anaesthetic hissed. My body grew heavy. But the noise refused to quieten. It rose higher, as if my brain was clawing at consciousness, fighting the slide into nothingness by drowning me in sound. The theatre blurred, lights bleeding into white haze. Nurses and surgeons melted into silhouettes.

And still the tinnitus was there; sharp, clear, hammering itself into me.

My last conscious moment was not silence. It was torment.

That is what tinnitus does. It stalks. It invades. It waits in the cracks between waking and sleep. It follows me into the night and even into surgery.

And yet, outside my body, this reality does not exist.

A condition the world thinks it understands

Tinnitus is everywhere. According to a 2023 study in The Lancet, an estimated 740 million people worldwide live with it; nearly one in ten of us. Of those, almost 120 million describe it as severe, grinding down concentration, stealing sleep, twisting daily life into something unmanageable. In the UK alone, the British Tinnitus Association estimates more than 7 million adults are affected.

It is one of the most common neurological conditions on earth. And yet, the world treats it as though it is simple.

For hearing people, tinnitus is usually framed as an interruption. A ringing in the ears after a loud concert. The whine of damage left behind by years of loud machinery. The low hum that makes quiet unbearable. Awareness posters show pale faces grimacing, hands clamped over ears, straining against a sound no one else can hear. Medical leaflets explain it neatly: a nuisance, sometimes distressing, but manageable.

The story is clear: you had silence, and tinnitus stole it from you.

But I am Deaf. And that script does not fit.

Tinnitus does not steal silence from me. It rewrites it. It is not the absence of quiet. It is the addition of noise.

Noise that is random. Invasive. Relentless.

Noise that no one else can hear. Noise that many professionals don’t even believe I could experience.

This is the first violence of Deaf tinnitus: invisibility.

Because the medical imagination doesn’t picture us here. Tinnitus is framed as a “hearing person’s problem.”

A defect that haunts those who once had peace. For Deaf people, silence is assumed to be absolute, inviolate.

Doctors ask me: “But you’re Deaf how can you have tinnitus?” As though Deaf brains are exempt from neurology. As though my reality is a contradiction, not a condition.

But tinnitus is not sound in the world. It is sound created by the brain. And Deaf brains are not silent.

What it actually feels like

“Ringing” is too small a word. Too clean. Too safe.

My tinnitus has been many things, but never neat.

Sometimes it is bingo numbers, barked into the hollow of my skull. Five. Seventeen. Eighty-eight. They came so clearly once that I grabbed a pen, scribbled them down, and checked them against the lottery. Because what if, in the middle of torment, my brain had decided to make me rich? Of course, it hadn’t. I didn’t win.

Tinnitus is cruel like that; it dangles meaning, mocks you for hoping, then leaves you with nothing but noise.

Other times it’s been a baby crying. Piercing, endless, a phantom scream that slices through everything. Your body reacts instinctively: tighten, respond, comfort. But there is no baby. No source. No end.

Just the body stuck in fight-or-flight, over and over.

Then there are the bells. Not gentle chimes, but church towers collapsing inside my skull. Heavy, metallic, striking so hard it felt as though bone itself was reverberating.

The aftershocks linger long after the strike, so even when it “stops,” it doesn’t.

And the worst; the music mash-up. Not one song, not even static, but eight different tracks mangled together in a loop that makes no sense. Lyrics clashing, choruses stacked, verses bleeding into one another until there’s rhythm but no logic. A broken record, but one you can’t switch off.

It makes my head spin, literally; the dizziness a reminder that sound, even phantom sound, is not neutral. It presses on the nervous system. It pulls you apart.

These are not background whispers.

They are intrusions. They hijack thought, break concentration, and snatch rest away. They make even silence feel hostile.

But the worst came when my cochlear implant wasn’t working.

For months, there was nothing to soften it. No shield. No distraction. No relief. The implant had always given me a kind of escape; the external sound, even if fractured, distracted the brain enough to dull the tinnitus.

Without it, there was nothing. My brain, deprived of input, filled the void with more noise.

Louder. Stranger. Crueller.

Each day, the sounds grew sharper, harsher. Each night, the chaos climbed higher. It didn’t fade with rest. It didn’t ease with time. It accumulated. Like a storm tightening around me.

Sleep became impossible. Nights stretched out like punishments, each one longer than the last. I lay awake, exhausted, dizzy with fatigue, my heart racing at phantom cries and clanging bells that no one else could hear.

Days blurred into one another, thick with exhaustion so heavy it felt like walking through glue. Even when my body begged for rest, my brain refused me silence.

It wasn’t distress. It was torture.

Every morning I woke with the same thought: I cannot do this again. Every night I told myself: surely it will ease, surely it will pass. But it didn’t. It got worse.

Louder. Harsher. More unbearable than the night before.

And there was no escape. I couldn’t “take it out,” because there was nothing left to take out. No implant to relieve it. No button to press. No switch to flip. Just me, locked in a body that refused to quieten.

That period changed me. It broke down any illusion that coping was infinite. It taught me how thin the line is between endurance and collapse.

It showed me that even silence can be weaponised against you.

And it left me with a fear that never leaves. That if my implant failed again, I would be back there; in the noise, in the torment, in the endless nights where silence is a lie and sleep is impossible.

That fear is not theoretical. It is memory. And memory doesn’t fade. It lives in the body.

The toll nobody measures

Tinnitus is exhausting.

For hearing people, it is often described as “always there.” A background hum, a constant ring that refuses to leave. Difficult, yes. But in a world where sound is the norm, it is framed as an intrusion into something familiar.

For me, as a Deaf person, it is worse than “there.” It is inescapable. It is unavoidable in a world where sound was never supposed to exist in the first place.

There are nights when sleep does not come at all. Not an hour. Not a minute. Just hours stretched into punishments, the body begging for rest but the brain refusing to surrender. There are days where the noise makes concentration collapse; reading impossible, working unbearable, even the smallest decision pulled apart by phantom cries, bells, and broken music.

And there are moments, too many of them, where it tips past discomfort into something else: a sense that I cannot carry it one second longer.

The physical toll is well documented for hearing people.

Research has linked tinnitus to severe insomnia, chronic fatigue, anxiety, depression, even suicidal thoughts.

A survey by the British Tinnitus Association found that nearly 40% of respondents said tinnitus had a significant negative impact on their mental health, and almost 15% reported suicidal or self-harm thoughts linked to their condition.

But none of those surveys asked me. None of them asked Deaf people. We are erased before the first question is written.

And when I do describe it, I am often met with disbelief. “But you’re Deaf - how can you have tinnitus?”

That question does more than dismiss my pain. It exposes how medicine defines reality through majority experience.

Because tinnitus is not “hearing sound.” It is the brain generating noise without an external source. Deaf people are not exempt from that neurology. Our brains are no less capable of phantom perception.

We are simply ignored, as though our suffering contradicts the script.

That erasure carries its own cost.

It leaves Deaf people to live the same exhaustion, the same sleepless nights, the same spiralling anxiety without recognition, without data, without pathways of care. It tells us that even in our pain, we are anomalies. That even our torment is invisible.

And invisibility, I’ve learned, is its own kind of torture.

A gap engineered into science

The global numbers are vast but Deaf tinnitus disappears in the data.

The Lancet study that estimated 740 million people worldwide experience tinnitus did not disaggregate Deaf participants. A 2019 systematic review of more than 1,200 tinnitus studies found fewer than 1% even mentioned Deaf people.

Most clinical trials specify “patients with acquired hearing loss” as the focus group, automatically excluding those born Deaf or living long-term with profound Deafness.

The design is not neutral. It shapes who counts.

Awareness campaigns reinforce the erasure: stock images of hearing people pressing hands over ears, slogans about “losing quiet.” The Deaf body is never pictured. Our experiences are never narrated.

The result is a double erasure:

• Tinnitus makes us invisible inside our own silence.

• Medicine makes us invisible inside its data.

And this is not an accident. It is structural.

Health systems are built on the logic of the majority. Study design begins with the “average” patient, and everything outside that frame is treated as anomaly; irrelevant, inconvenient, unworthy of measurement.

If you are Deaf, your pain falls outside the script.

This has consequences. Without data, there is no recognition. Without recognition, there are no tailored pathways of care. Without care, there is only disbelief.

Medicine prides itself on being evidence-based. But when the evidence excludes us, that evidence is not truth. It is majority bias disguised as fact.

And what that really means is this: Deaf people are forced to live an unmeasured suffering. A silence so loud it cannot be captured because no one has bothered to design the tools to listen.

What the science says and doesn’t

Medically, tinnitus is classified as a phantom perception. Not sound in the air, but noise generated by the brain itself.

Neuroscientists compare it to phantom limb syndrome: when an arm is gone but still burns with pain, when a foot long amputated still itches. The body disappears, but the brain refuses to let it go.

The same happens with hearing. When input is disrupted, the brain does not quietly accept silence. It manufactures it.

It fills the void with its own signals; bells, crying, numbers, songs. A hallucination of sound that no one else can hear.

Which means Deaf people can and do experience tinnitus.

Profoundly. Relentlessly. Torturously. The ear may be silent, but the brain never is.

And yet, you would not know this from the science.

A systematic review of over a thousand tinnitus studies found that fewer than 1% even mentioned Deaf participants.

A 2022 scoping review confirmed the same absence: Deaf adults are almost never included unless the study is about cochlear implants and even then, tinnitus is treated as a side-note, an inconvenience in the way of “real” outcomes.

The question what is tinnitus like for Deaf people? is almost never asked.

This isn’t an oversight. It’s an assumption that tinnitus “belongs” to hearing loss, not Deafness. The narrative is simple: you once heard, you lost hearing, your brain now invents a phantom ring to fill the gap.

I am born Deaf. And that is exactly where medicine ends the story. If you were born Deaf, or have lived long-term without sound, the assumption is final: no input, no phantom. No tinnitus. No torment. No questions worth asking.

That assumption is false. And its consequences are brutal.

Because the cycle it creates is self-perpetuating:

• Research ignores us.

• Healthcare doesn’t ask us.

• Awareness campaigns don’t picture us.

• And the data stays silent.

Not because Deaf people don’t suffer tinnitus. But because science has engineered us out of its frame of recognition.

Silence, in this case, is not an absence of sound. It is the absence of care. The absence of imagination. The absence of us.

Why this matters far beyond tinnitus

You might be tempted to dismiss Deaf tinnitus as niche; a minority of a minority. But that dismissal is exactly what reveals the problem. What you’re looking at isn’t just one condition quietly overlooked.

It’s a mechanism of exclusion built into medicine itself.

Because the erasure of Deaf tinnitus exposes how health systems operate: when research, funding and care are designed only around the majority experience, minority lives vanish. And that vanishing isn’t benign; it has consequences.

• For women: Clinical trials in cardiovascular disease, heart failure and coronary interventions have historically included women at only around 20–30% of participants, even though heart disease is a leading cause of death in women.

• For racial and ethnic minorities: Studies show under-representation in psychiatric research, mental health care access, and clinical trials. For example, fewer Black and Hispanic adults with moderate to severe symptoms receive mental health services compared with White adults.

• For disabled people: Recent investigations found that a large proportion of clinical trials exclude people with disabilities; one review found that 68% of trials excluded people with psychiatric disabilities, 53% excluded those with HIV/hepatitis, and others excluded by hearing/vision/mobility.

Deaf tinnitus is part of the same story. The problem isn’t simply “lack of awareness.” It is the way science, funding and healthcare decide whose pain counts. When you’re outside the majority mould, your suffering becomes invisible; not because it doesn’t exist, but because it falls outside the framework of recognition.

And that matters. Because if medicine builds itself assuming you look a certain way, hear a certain way, live a certain way, then millions of lives; Deaf lives, minority lives, disabled lives are left unmeasured, unstudied and un-cared for.

Living in paradox

For hearing people, tinnitus is described as the loss of silence. A ring where there should be calm. A hum that steals peace.

For me, it is the opposite. It is the paradox of living in a world people call silent; a silence that has never, ever been quiet.

Imagine being told your entire existence is defined by absence.

You are Deaf. You live in silence.

Then imagine that same silence being torn apart by noises no one else can hear. Bells that never stop ringing. Voices that call numbers that don’t exist. Babies that cry in empty rooms. Music fractured into nonsense loops.

Noise without sound. Sound without witness.

And when you try to explain it? Blank faces. Doubt. Disbelief. “But you’re Deaf how can you have tinnitus?”

That disbelief is almost worse than the noise itself. Because it leaves you stranded in a contradiction no one will name.

This is Deaf tinnitus: a condition that rewrites silence into torment, while the world insists that torment is impossible.

It is more than a medical condition. It is a lived contradiction.

A betrayal of silence itself.

What must change

Tinnitus is not a hearing-only condition. Deaf people live it. Endure it. Break under it. And yet we are erased from the science that claims to measure it. That erasure is not a mistake. It is a choice. And choices can change.

• Research must stop excluding us. Deaf participants are not anomalies; we are part of the population. If your data does not capture us, your science is incomplete.

• Healthcare must stop gaslighting us. When a Deaf patient says “I have tinnitus,” the response cannot be disbelief. Training must begin with this truth: phantom perception is neurological, not auditory. Dismissing it is malpractice.

• Awareness must show our faces. Campaigns that picture only hearing people reinforce the myth that silence belongs to Deafness. They erase the truth of our suffering. They must end.

• Policy must enforce inclusivity. Study design that erases whole groups is not neutral. It is biased. Funding should demand inclusion, or it should not be called science.

This is not about charity. It is about accuracy.

Without Deaf inclusion, medicine is not evidence-based. It is majority-biased. And majority-biased medicine is dangerous; not only to us, but to everyone whose body falls outside the frame.

Closing: the sound of being erased

I am profoundly Deaf. I live with tinnitus every day. Not softly, not occasionally, but in ways that turn silence into chaos; surreal, relentless, sometimes unbearable.

The world insists Deafness means quiet. A neat absence. A tidy void.

But my silence has never been silent. It has been bingo numbers shouted into the dark. Babies wailing in empty rooms. Bells collapsing inside my skull. Music broken into jagged fragments that never resolve.

Noise that no one else can hear. Noise that no one else is even asked about.

That is the cruelty. Not just the tinnitus itself, but the fact that medicine has built an entire story about it and written us out.

The suffering is real. The torment is real. The fear is real. And yet the data is silent, because the questions were never designed for us.

So the real issue is not whether Deaf people can have tinnitus. The real issue is this: why has science with all its surveys, its funding, its claims of evidence never cared enough to ask?

Until it does, the noise will not just live in my head. It will echo in the silence of medicine itself.