When Your Own Voice Is Too Loud: Why Patulous Eustachian Tube Dysfunction Awareness Matters

For most people, breathing is background noise. It happens quietly and automatically, without demanding attention.

For someone living with Patulous Eustachian Tube Dysfunction, or pETD, breathing can become one of the loudest sounds in the room.

I know what it is like to hear my own voice echo inside my head. I know the strange discomfort of hearing my breathing amplified, as though a microphone has been placed somewhere deep inside my ear. I know the pressure, crackling, fullness, sound distortion, and exhaustion that can make an ordinary conversation feel like work.

I also know how difficult it is to explain these symptoms to someone who has never experienced them.

From the outside, I may look completely fine. There is no cast, bandage, or visible sign explaining why I am distracted, overwhelmed, or desperate to lie down for a few minutes. Yet inside, my body can feel unbearably loud.

That is one of the reasons pETD awareness matters.

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Living With an Invisible Echo

** Living with pETD can feel like being trapped in an echo chamber that no one else can hear.

Some days are more manageable. On other days, every breath and word seems to bounce back through my head like a loudspeaker at a nightclub. Symptoms can fluctuate without warning, which makes it difficult to plan work, conversations, appointments, travel, or even simple activities.

Chapter Five of Strength for the Thunder Inside describes pETD as an unpredictable and exhausting condition. It also explains that symptom management is rarely one-size-fits-all. People often have to experiment carefully with hydration, positioning, breathing strategies, medications, or other approaches to determine what helps them function more comfortably.

That unpredictability changes how you move through the world. You begin noticing things other people never have to think about. Am I hydrated enough? Will talking make the echo worse? Is the room too loud? Can I step away and lie down? Will this doctor understand what I am describing, or will I have to explain everything from the beginning again?

It can feel as though you are constantly negotiating with your own body.

There is also an emotional cost to being unable to escape your own internal sounds. When symptoms continue day after day, they can affect concentration, sleep, confidence, communication, relationships, and mental health. The distress is not a sign of weakness. It is a human response to living with something relentless, unpredictable, and poorly understood.

The Loneliness of Not Being Understood

One of the most painful parts of pETD is not always the sound itself. Sometimes it is the feeling that no one believes how disruptive it can be.

Because the condition is invisible, patients may be told their symptoms are not serious, that they should simply ignore them, or that there is little reason for concern. Others spend years searching for a diagnosis or trying to find a clinician who is familiar with pETD.

Being dismissed can make a difficult condition even harder. When you repeatedly hear that everything looks normal, you may begin questioning yourself. You may wonder whether you are describing the symptoms incorrectly or whether you should stop bringing them up altogether.

I have learned that being heard can be part of healing. It does not immediately quiet the echo. It does not erase the pressure or distortion. But having someone say, “I believe you,” can help return a piece of dignity that chronic illness often takes away.

Awareness matters because it gives patients language for what they are experiencing. It helps families recognize that the person they love is not exaggerating. It encourages healthcare professionals to listen more closely. It reminds patients that they are not imagining the sound, the discomfort, or the emotional toll. Most importantly, awareness tells people with pETD that they are not alone.

Why the Collinson Foundation Exists

The Collinson Foundation for Patulous Eustachian Tube was built from lived experience and from the understanding that pETD patients need more than sympathy. They need trustworthy information, compassionate support, medical awareness, research, and a community that understands what it means to live inside the echo. The foundation’s purpose is to help fill a serious gap in healthcare advocacy. Its work is centered on helping people with pETD feel seen, heard, and supported rather than isolated or dismissed.

That mission is personal to me.

When you have spent years searching for answers, you understand how valuable one clear resource can be. When you have struggled to explain symptoms, you understand the relief of finding words that finally fit. When you have sat in an appointment wondering whether the clinician truly understands pETD, you recognize the importance of educating both patients and medical professionals.

The foundation is fostering resources because patients should not have to become full-time medical researchers simply to understand what may be happening in their own bodies.

We should not have to piece together our care from scattered conversations, conflicting information, and late-night internet searches.

We deserve a place where information is organized, where patient experiences are respected, and where people can learn how to prepare for appointments, describe symptoms, ask informed questions, and connect with others who understand.

Building Resources Patients Can Actually Use

The Collinson Foundation is developing its mission around four interconnected areas: research, education, support, and community. Education helps people understand pETD symptoms and communicate more confidently with healthcare professionals. It can also help families, medical students, audiologists, ENTs, otologists, neurotologists, and other providers recognize how deeply this condition can affect a person’s quality of life.

Support gives patients somewhere to turn when the condition feels isolating. The foundation’s vision includes peer-led groups, educational resources, emotional guidance, connection to others, and assistance in navigating the search for knowledgeable care. Community reminds us that we do not have to keep explaining ourselves from the beginning.

There is a particular kind of relief in speaking with someone who understands what it means to hear their own breathing too loudly. You do not have to prove that the symptom is real. You do not have to translate the experience into something more familiar. The other person already understands the frustration, the fear, and sometimes even the dark humor required to make it through another noisy day. Research gives us hope that understanding and treatment can improve. Patients need thoughtful investigation into causes, diagnostic tools, symptom management, treatment outcomes, and long-term safety. We also need patient experiences to be treated as meaningful information rather than dismissed as anecdotal noise. The foundation’s four pillars work together because no single resource can meet every need. Information without compassion can feel cold. Support without reliable education can leave people confused. Research without patient voices can overlook what daily life with pETD actually feels like.

We need all of it.

Lived Experience Belongs in the Conversation

People living with pETD are not simply subjects of care. We are partners in understanding the condition.

We know what our symptoms feel like at 2:00 in the morning. We know which positions bring temporary relief. We know what makes symptoms worse. We know how a treatment affected our daily lives after the appointment ended and everyone else went home.

That knowledge matters.

The Collinson Foundation was created in honor of Craig Collinson, whose experiences and advocacy made the need for awareness, education, safer treatment pathways, and patient support impossible to ignore. The foundation carries forward his belief that people with pETD should not be left to navigate complex or irreversible decisions without clear information, respect, and support. Craig’s legacy reminds us that listening is not a courtesy. It is part of responsible care.

When patients ask whether a treatment could make symptoms worse, whether it can be reversed, or what the long-term consequences might be, those questions deserve thoughtful answers.

When patients describe symptoms that sound unusual, they deserve curiosity rather than disbelief.

When someone says that pETD is affecting their ability to sleep, communicate, work, or cope emotionally, that statement should be taken seriously. Awareness Is More Than Knowing the Name

Awareness does not end when someone learns what the letters pETD stand for.

True awareness means understanding that a person can look well while struggling intensely.

It means recognizing that hearing your own voice or breathing amplified is not merely an inconvenience.

It means acknowledging the emotional and psychological strain that can develop when symptoms are constant and answers are limited. It means encouraging patients to advocate for themselves without making them carry the entire burden of educating the medical system.

It also means creating resources before someone reaches a crisis point.

That is the work the Collinson Foundation is committed to doing. We want patients to find information earlier. We want families to understand more. We want providers to have better educational resources. We want researchers to recognize the urgency. We want every person living with pETD to know that someone hears them, believes them, and is working to make the path less lonely.

From Echoes to Action

I would not have chosen this condition or the experiences that came with it. But I can choose what I do with the story.

I can speak honestly about the echo.

I can help raise awareness.

I can support the creation of resources that I wish had been available when my symptoms began.

I can remind another person that they are not losing their mind simply because no one else can hear what they hear.

That is how lived experience becomes advocacy.

The Collinson Foundation for Patulous Eustachian Tube is turning echoes into action by building education, resources, support, community, and hope for people living with pETD.

We are still learning. We are still building. We do not have every answer.

But we are listening.

We are speaking.

And we are making sure that people living with pETD no longer have to suffer unheard.

To learn more, access resources, support the mission, or connect with the foundation, visit www.cfpETD.org.

From Echoes to Action — Raising Voices for pETD. This blog reflects personal experience and advocacy and is not intended as medical advice. Anyone experiencing ear symptoms or changes in hearing should consult a qualified healthcare professional. If chronic symptoms are causing significant emotional distress, please seek support from a licensed mental health professional or an appropriate crisis resource.