On March 23rd, I underwent an embolization procedure for a suspected CSF venous fistula in the thoracic spine. The procedure itself was considered successful, and for that I am deeply grateful. However, in the days following, my pain escalated beyond what I could manage at home, ultimately leading to an emergency room visit. That decision was not made lightly. In fact, it was the last place I wanted to be.

Over the past three months, I had reached out to multiple providers trying to communicate increasing levels of chronic neurological pain from a rare spinal condition affecting my nerve roots—pain that was different, worsening, and specific. I was trying to avoid exactly what happened: needing emergency care. But when imaging returned “normal,” it brought an immediate and familiar wave of fear. Not relief. Because in my experience, “normal” does not always mean okay.

It often means unseen.

Do NOT Translate Me in Fluorescent Light

I learned something in the emergency room that had nothing to do with medicine.
That truth can be present and still be treated like a rumor.

My body does not speak in lab values. It speaks in tides.
In pressure that rises behind my eyes.  In pain levels most people cannot comprehend.  In genuine fears of an unsure future.  

There is a language my body has been speaking for years,
not always in words
but in pressure,
in patterns,
in something that returns again and again.

And still, I find myself translating what should not require translation,
trying to explain what I already know in a system that often….waits…

…for proof before it listens.

Time itself moves differently there in the ER.
Not forward (9 1 1 )
but suspended.

Time measured not in minutes but in acknowledgment
in how long it takes to be seen…or not seen…

I was told my imaging was normal as if that should quiet everything.
It’s as if absence of visible cause could erase lived experience.
But my body does not speak in images alone.
It speaks in sensation. In specificity. In something I have learned to recognize.

And I remember thinking, not for the first time
What about the ones who don’t have what I have had?
Not the language. Not the support. Not the diagnosis yet.
Not the capability to keep asking, to keep returning, to keep being told to wait.

Because I have watched. In quiet spaces.
In support groups. People reach their limit.
NOT from lack of strength, but from the WEIGHT.

Of pain, procedures, and uncertain outcomes,
that does not resolve but compounds.

And somewhere in all of this, I have begun to feel
less like a person.
And more like a case.  
A question????
Something being studied.  Something being tried.  Something not fully understood.

(Surface work if you ask me 
because the depth required  to survive this  
does not show up, in charts, or summaries, or quick conclusions .)

And yet my body has been consistent
The entire time. Steady in its message.
Even when everything around it questions it.
Even when I am told to reconsider, to wait, to reframe...
(When so many speak to me as if I'm to blame or with shame.)

I did not want to go to the ER.  I "did my best" to avoid it.
I asked. I documented.
I reached out because I knew. I knew what that environment means.
For pain like mine.  For conditions like this.
For things that do not fit cleanly into expected patterns.

And still...I am here..
Learning... slowly...
PAINfully.
To accept what my body has been saying the entire time.



I sketched this piece during an emergency room visit while waiting for pain treatment.       What may have looked like stillness, or even calm, was actually survival.  Art has always been one of the ways I process and endure what my body cannot yet put into linear language.  This is not an original inspiration or idea.  (Even my pre-teen daughter joked about reviewing basic rules of sketching human anatomy when she saw it up on my drawing tablet.  How can you not help but love that?)

My hope is not to assign blame, but to invite awareness because there are forms of pain that don’t translate easily into tests, timelines, or standard expectations, and they still deserve to be taken seriously.

Personal Thoughts and Reflections

This reflection is not about any one person or moment, but about a broader experience many patients quietly carry. It lives in the space between what is felt and what is acknowledged. My hope is not to assign blame, but to invite awareness. Because there are forms of pain that do not translate easily into tests, timelines, or expectations, and yet they remain real, present, and deeply impactful.

There are experiences that exist outside the language we are most comfortable trusting. They do not always show up clearly in data or follow predictable patterns, but they are still lived in real time, in real bodies. And when those experiences are overlooked or minimized, the distance between patient and provider, between suffering and support, quietly widens.

And still, these experiences deserve to be taken seriously. Not only when they are measurable, but when they are expressed. Not only when they are understood, but when they are felt. Because listening, truly listening, has the power to close that space, and to remind people that they are still seen, still human, and still worthy of care.

For years, my body was telling a story that I did not yet have the language to explain. What I was experiencing did not fit neatly into what I had been taught, even as a nurse. The structures I once memorized in school, like the meninges and spinal cord, became something entirely different when I had to live inside a system that was malfunctioning.

This piece is both an exploration and a translation. It is my attempt to understand what my body has been trying to say all along, and to share that understanding in a way that others can feel, not just study. When most people think about the brain, they imagine neurons, thoughts, memories, and emotions. But the brain does not sit alone inside the skull. It floats.

Inside your head and spine is a clear liquid called cerebrospinal fluid, or CSF. This fluid surrounds the brain and spinal cord and protects them from injury. It acts like a cushion, a temperature regulator, and even a delivery system for nutrients and waste removal.

Think of the brain as a delicate moon floating in a small ocean. Now imagine something else: the container that holds that ocean. That container is called the dura mater.

The dura mater is the tough outer membrane that surrounds the brain and spinal cord. The name comes from Latin and literally means “tough mother.” It is made of dense connective tissue and acts as the protective outer layer of the central nervous system.

For most people, the dura quietly does its job for an entire lifetime. But sometimes, the story becomes more complicated.

The Three Layers Protecting the Brain

If you peeled back the skull and looked at the coverings of the brain, you would find three protective types called the meninges.

From outside to inside they are: the dura mater (the tough outer layer), the arachnoid mater (the delicate middle layer), and the pia mater (the thin layer that hugs the brain itself).

Between these layers is the cerebrospinal fluid. That fluid flows from the brain down through the spinal canal and back again in a continuous loop. It pulses slightly with every heartbeat and every breath.

In other words, the nervous system is not a dry structure. It is a living hydraulic system.

The Spine is a Long Fluid Column

The brain and spinal cord share one long column of cerebrospinal fluid.

Imagine a clear tube filled with water that runs from your head all the way down your back. Inside that tube sits the spinal cord. Around it flows the CSF. And surrounding everything is the dura.

The system works beautifully when everything is balanced. But like any system that relies on pressure and fluid flow, problems can occur if the container changes shape.

Sometimes the dura stretches. Sometimes it forms small outpouchings. Sometimes fluid finds unexpected pathways.

The Weak Points of the System

Along the spine, nerves exit at every level. These nerves leave the spinal cord through small openings in the vertebrae.

Each nerve root is wrapped in a sleeve of dura. For most people these sleeves remain small and stable. But occasionally they stretch and form structures called perineural cysts. These cysts are sometimes called Tarlov cysts, named after the doctor who first described them.

They form when cerebrospinal fluid pushes outward into the nerve root sleeve, creating a fluid-filled sac. Many cysts never cause symptoms. But sometimes they grow large enough to affect nearby nerves.

And sometimes they appear in multiple places along the spine.

When the System Changes Shape

Doctors have several names for changes in the dura. You may hear terms like: perineural cysts, meningeal diverticula, or dural ectasia. At first glance those sound like completely different conditions. But structurally they often represent the same basic idea. The dura has stretched or expanded in certain places.

If you imagine the spinal fluid system like a long water balloon, these structures are like small bulges forming along the sides. Each bulge changes how fluid pressure moves through the system.

The Ocean of the Mind

Here is something many people never learn. Your brain does not sit heavily inside your skull.

It actually floats in cerebrospinal fluid (CSF). Without that fluid, the brain would compress its own blood supply under its weight.

The CSF acts like a buoyancy system. It lifts the brain and allows it to move safely with normal motion.

That is why some doctors describe the CSF system as an internal ocean protecting the nervous system.

Which leads back to the dura.

The dura is the structure holds that ocean in place. Without it, the fluid would not remain contained. Without the fluid, the brain would not float.

This is the system I’ve been learning to live within. What once felt invisible now has shape, movement, and meaning.

When Fluid Finds a New Path

Sometimes cerebrospinal fluid escapes the system. This can happen through small tears in the dura.

But there is another type of leak that doctors only began recognizing widely in the past decade. It is called a CSF venous fistula. A fistula is an abnormal connection between two structures. In this case, it means the cerebrospinal fluid space has connected directly to a vein. Instead of the fluid staying in the spinal system, some of it drains into the bloodstream.

This is very difficult to detect on routine scans. Why? Because the fluid does not pool outside the spine. It disappears into the veins.

To find these connections, doctors sometimes have to perform specialized imaging tests called myelograms, where contrast dye is injected into the spinal fluid and tracked in real time.

The Spine as a System

One important thing to understand is that the brain and spine function as one continuous system. Changes in one area can influence another.

For example:

• cysts may form in one part of the spine
• pressure may shift elsewhere
• fluid may redistribute over time

The system adapts. Sometimes it adapts well. Other times it finds unusual pathways to relieve pressure. That is why doctors sometimes see patterns of cysts, diverticula, and fistulas appearing in the same spine. They are different expressions of the same fluid system responding to stress.

When the Body Often Knows First

One of the most remarkable things about chronic neurological conditions is how often the body figures things out before imaging does.

Patients notice patterns. Certain positions may relieve pressure. Other positions may worsen symptoms.

For some people, lying flat helps. For others, turning to one side provides relief. The nervous system quietly learns what protects the spine. Years later, when imaging reveals the structural explanation, those patterns suddenly make sense.

The body was responding to real physics all along.

What the Dura Teaches Us

The dura mater is not something most people think about.

Yet it performs one of the most important jobs in the human body. It protects the brain. It contains the ocean of cerebrospinal fluid. It stabilizes the spinal cord.

And when it changes shape, the entire nervous system feels it. Learning about the dura reveals something profound about human biology.

Our bodies are not just structures. They are systems of balance. Fluid pressure. Gravity. Tissue strength. Motion. Adaptation.

When one part of the system shifts, the rest responds. Sometimes quietly. Sometimes dramatically. But always intelligently. Inside each of us is a protective sea. And surrounding that sea is a remarkable membrane that holds everything in place. The dura. The “tough mother”. The quiet protector of the brain’s floating world.

The Physics of Movement

When the spinal fluid system is stable, most people never think about gravity or pressure inside their spine.

They simply move. They run. They jump. They twist and turn without hesitation. But when the dura has been weakened or altered, those same movements begin to carry a different meaning. Sudden changes in pressure can matter. Sharp twists of the spine can matter. Even something as simple as rapid acceleration or impact can feel risky. Activities that once felt joyful can start to feel uncertain.

When the system changes, life changes with it. Learning about the dura and the cerebrospinal fluid system is fascinating from a scientific perspective. But science only tells part of the story.

When doctors describe findings like perineural cysts, dural ectasia, or CSF venous fistula, the words can sound small and technical. They appear as brief notes on imaging reports or in clinical summaries.

But those words describe something very real. They describe a system that no longer behaves the way it once did. For many people, the first thing that changes is to trust in their own body.

Living With the Memory of a Leak

One of the hardest parts of recovering from a CSF leak or fistula is the awareness that the system has already shown it can fail.

Even after treatment, there is often a lingering sense of caution. The nervous system remembers what happened.

There can be a quiet fear that the “dam” holding the fluid system together could leak again. Sudden movements may feel more intimidating. Certain activities may always carry a question mark.

Not because the body is incapable of healing, but because the memory of instability changes how a person approaches movement.

There are some activities that many people with spinal fluid disorders eventually learn to avoid. High-impact sports like softball, where quick twisting and sudden movement are constant. Fast downhill motion like skiing, where falls or abrupt stops can place intense forces on the spine. Even the sudden acceleration and drops of rollercoasters, which once felt exhilarating, can become something to think twice about.

None of those changes appear on a radiology report. But they become part of daily life. Those are the favorites of some of my times before the accident. And now, they are permanently gone.

Every diagnosis carries a quiet list of adjustments that patients begin to make.

Grief Is Part of Learning a New Body

This is the part that medicine rarely talks about. There is grief in realizing that some things may never feel the same again. Grief for the body that once moved freely without calculation. Grief for activities that once felt effortless. Grief for the version of yourself that did not have to think about spinal fluid dynamics.

But grief is not the same thing as defeat. It is simply the process of acknowledging that something meaningful has changed.

A Different Kind of Strength

The body adapts. The nervous system learns new limits and new rhythms.

Strength begins to look different. Instead of pushing through pain or ignoring warning signs, strength becomes the ability to listen carefully to what the body is saying.

To move thoughtfully. To protect a system that has already endured more stress than most people ever realize.

In that sense, understanding the dura mater and the fluid system of the spine is not only a lesson in anatomy. It is a lesson in humility.

The body is complex.
The systems that protect the brain are delicate.
And learning how to live within those realities requires a different kind of courage.

The Body Was Right Before the Tests Were

One of the strangest parts of living with a complex neurological condition is realizing that the body often knows something is wrong long before the medical system can prove it.

For years I described symptoms that did not behave the way doctors expected.

Pain that changed with gravity. Pressure that eased only when lying flat. A nervous system that felt unstable in ways that were difficult to explain.

Those experiences lived in the body long before they appeared on scans or imaging reports.

Symptoms are often treated as subjective. They belong to the person experiencing them. They require interpretation. But sometimes the body is simply reporting physics that medicine has not yet learned to measure clearly.

Eventually, the tests caught up.

The imaging finally showed what my body had been trying to explain all along. And when those moments have come recently, it brings both relief and reflection.

Relief that the system can finally see what was happening. Reflection on how long the body carried that truth alone.

Moving Forward With a Different Kind of Purpose

Living with changes to the spinal fluid system forces a person to rethink many things about the future.

The question is no longer simply, What can I push through? Instead it becomes something more thoughtful:

How can I protect the system that protects my brain?

Some activities may never feel the same again. Sudden movements, high-impact sports, or extreme acceleration may always carry a level of risk that did not exist before.

That reality brings grief. But it also brings clarity.

Because once the body has shown you its limits, you begin to understand how precious stability really is.

A Mother’s Perspective

As a mother, the future now looks different than I once imagined.

My goal is no longer to prove how much I can push through physically. My goal is to protect the health I still have so I can be present for the people who matter most.

Every day I am determined to strive for the best health possible. not only for myself, but for the family who walks through this journey beside me.

Strength now means pacing. Strength means listening. Strength means building a life that respects the limits of the nervous system instead of ignoring them.

The Meaning of Quality of Life

Medicine often focuses on diagnoses and procedures. But patients live inside something much larger than that. They live inside the question of quality of life.

Quality of life means more than simply surviving a condition. It means finding ways to continue participating in the world.

It means protecting moments of joy. It means building routines, relationships, and purpose around the realities of the body rather than constantly fighting against them.

Quality of life asks a different kind of question: How do we live well within the body we have now?

As a person who has to lie flat 20-23 hours per day currently, I am trying to figure out a better quality of life.

The Ocean is Still There

Learning about the dura mater and the cerebrospinal fluid system changed the way I see the human body. Inside each of us is a delicate ocean protecting the brain and spinal cord. The dura holds that ocean in place.

Sometimes the system becomes fragile. Sometimes it requires repair. Sometimes it forces us to rethink how we move through the world. But the system is still remarkable. The nervous system is still capable of adaptation.

Even when the body changes, purpose and meaning can continue to grow in new directions. And every day forward is an opportunity to learn how to live more gently within that ocean.

I used to think of anatomy as something fixed. It was something you learn, label, and move on from. Now I understand it differently.

The dura is not just a structure. The cerebrospinal fluid is not just a concept. These are systems I have had to live within, navigate, and learn from in ways I never expected. What once felt invisible now has form, and what once felt confusing now carries meaning.

This piece is not just about anatomy.
It is about learning to trust the body again — even after everything.

Researching and Further Reading

Much of our current understanding of the dura mater and cerebrospinal fluid system comes from foundational neuroanatomy texts and evolving research in spinal CSF dynamics. For readers interested in learning more, helpful resources include Gray’s Anatomy, Netter’s Atlas of Human Anatomy, and clinical reviews on cerebrospinal fluid physiology and spinal meningeal disorders. Research into CSF venous fistulas, perineural (Tarlov) cysts, and connective tissue-related dural changes continues to grow as these conditions become better recognized.

Health Disclaimer

This space reflects my personal experience as both a nurse and a patient, along with general medical information. It is not a substitute for professional medical advice, diagnosis, or treatment. Please speak with your own healthcare provider about your individual situation.

In the sky
our family becomes letters
watching from a distance.
Below
the world burns red
loud and chaotic
like a battlefield.
Good and evil
do not look the way we expect.
Sometimes they look like noise,
pain,
and survival.
And somewhere in the middle
a stubborn light
keeps radiating
through the fire.

Subscribe now

Four letters hidden in the sky for the people who hold my world together.

Below them, a landscape that feels almost hellish.

A reminder that even when life feels like a battlefield, love still watches from above.

In a song of hope,

MJ

About a year into trying to understand the pain in my spine after I was in a serious motor vehicle accident, I was seeing both a neurosurgeon and a pain management doctor. At that point I had already begun researching Tarlov cyst disease and cerebrospinal fluid leaks. I knew enough to understand that certain procedures commonly used for back pain can be risky for patients with fragile dura or perineural cysts.

Because of that, I had been clear from the beginning that I did not want injections into my spine.

The neurosurgeon in the office suggested something that sounded more reasonable. An SI joint injection on the right side. The purpose was simply diagnostic. If the sacroiliac joint responded to the injection, it might explain the pain. If it did not, we could continue investigating other causes before moving forward with more invasive testing like a myelogram.

That seemed fair.

So I drove myself to the appointment.

I remember signing the consent form quickly. I was nervous, but I believed we were doing the procedure we had discussed. I planned to go through it without sedation or pain medication, just breathing and getting through it.

When I walked into the procedure room, the music was blaring. Loud music filled with explicit lyrics. I was trying to calm myself and focus on breathing, but it was impossible to concentrate. Eventually I asked the nurse to turn it off.

Then the procedure began.

It was image guided. As the needle was placed, I felt something I had never felt before. A sharp electrical sensation shot down my leg. A sudden zing through the sciatic nerve that made my whole body tense.

Then my right leg became weak.

Not numb exactly. Just weak. As if the strength had drained out of it.

I had driven myself there, so I had to drive home. But I remember sitting in the parking lot for a long time first because my leg did not feel stable enough to leave right away.

Over the next several hours the pain began to escalate.

And it kept escalating.

Within days the pain had become so intense that I would go on the back deck at all times of the night, stare off into the woods in the back of our house in the middle of the night, screaming in my head from the pain, but crying quietly outside. I kept replaying the procedure in my mind and asking myself the same question.

What just happened? How could I feel this terrible after an SI joint injection?

When I contacted the office about the worsening pain, they told me to go to the emergency room. That something else must be wrong. That a procedure like this would not cause that much pain.

Sketchbook Reflection

I created this page during a time when I was trying to make sense of what my body was going through. The quote by Carl Jung stopped me when I first read it: “There is no coming to consciousness without pain.”

At the time, I did not yet have answers for what was happening in my spine. I only knew that something was wrong, and that becoming aware of it meant confronting a reality that others were not yet seeing.

Looking back now, this page feels like a quiet marker in the middle of that journey. Awareness can be painful, but it is also the beginning of understanding, and sometimes the beginning of reclaiming your voice. This sketch was drawn during this time.

When Pain Is Dismissed

The days after that injection were some of the most frightening of my medical journey. The pain was escalating rapidly, and I could feel that something in my body was not reacting normally.

Eventually I went to the emergency room, hoping someone would at least evaluate whether the injection had caused damage.

By that point I had discovered that the only position that brought temporary relief was squatting. It sounds strange, but it allowed a small release of pressure in my back. I could briefly reduce the pain that way.

The physician assistant who evaluated me focused on that moment.

Because I was able to squat down and lift my backpack, he questioned whether I could really be experiencing severe back pain. I tried to explain that the pain had dramatically worsened immediately after the injection and that something felt very wrong.

Instead of focusing on the new symptoms, the conversation shifted in another direction.

He told me he had “looked me up” and asked why I had been “upstairs” before. When he gestured toward the upper floors of the hospital and asked what he meant, he repeated himself slowly and gestured something strange with his hands and eyebrows. I realized he was implying psychiatric treatment that I had.

The problem was that I had never been admitted to that hospital.

The only time I had ever been in that building was as a nursing student completing clinical rotations during COVID.

In that moment it became clear that my concerns were being filtered through a different lens. Not a neurological one. A psychological one.

I had come seeking evaluation after a spinal procedure that had caused sudden and escalating pain. What I encountered instead was suspicion.

When I asked if imaging could be done to make sure nothing had gone wrong with my spine, the request was brushed aside. Instead, I was offered another injection.

After what had just happened to my body, I declined.

And then I walked out.

Later I reported the interaction through the hospital’s patient advocacy channels because the bias was so clear. I explained exactly what had happened and how my concerns had been dismissed. I was told it would be reviewed.

Nothing ever came of it.

There was no follow up. No explanation. No acknowledgement. I called three separate times. I wrote a letter. And still, there was never any follow up of any kind.

Looking back now, the pattern is painfully obvious.

First there was the physical violation of consent with the unexpected spinal injection.

Then there was the medical dismissal that followed, where escalating pain was interpreted through the lens of mental health history rather than investigated as a possible complication.

When patients carry psychiatric diagnoses in their charts, it can quietly change how their physical symptoms are interpreted. Even when those symptoms are new, sudden, and medically significant.

For me, that moment became one of the clearest examples of how easily real neurological suffering can be minimized when bias enters the room.

Ten days later I returned to the pain management office for a follow up.

The medical assistant looked at my chart and asked if I was there regarding my L4 L5 transforaminal steroid injection.

I told her no. I had come in for an SI joint injection.

She looked back at the chart again.

“No,” she said. “It says you had an L4 L5 transforaminal injection.”

When the physician came into the room, I asked him about it directly.

He confirmed that he had changed the procedure.

He said he did not believe the SI joint was the source of the pain, so he had performed the spinal injection instead.

I remember sitting there stunned.

That was the procedure I had specifically said I did not want.

At that point I did not yet have confirmation of the extent of the perineural cysts throughout my spine. I also did not yet know about the CSF venous fistula that would eventually be discovered at T7 and T8.

But I already knew that injections into the spine were something I had tried to avoid.

When I asked if the injection could have irritated a nerve root or a cyst, the concern was brushed aside.

“It’s not that big of a deal.”

But my body was telling a very different story.

I went home that day and sobbed to my husband.

“They injected my spine,” I told him. “I told them not to.”

That moment marked the beginning of a dramatic escalation in my neurological pain. Everything became worse. The sacral pain intensified. The nerve pain became more volatile. My sense of safety within medical procedures disappeared.

To make matters even more difficult, when I returned to the neurosurgeon who had originally suggested the SI joint test, he told me he could not move forward with treatment until an SI joint injection had been attempted.

The same injection I had originally agreed to.

But by that point I could not continue care within that system. I no longer trusted that the procedure discussed with me would be the procedure performed.

So I left and started over somewhere else.

Years later I now have confirmation of a CSF venous fistula and perineural cysts throughout my spine. I have undergone myelograms and continue navigating the long recovery from procedures that most people will never need to think about.

People sometimes wonder why patients with complex spinal conditions approach procedures with caution, fear, or hesitation.

This is why.

Sometimes the moment that changes everything begins with what was supposed to be a simple test.

When Consent Is Broken

There is another layer to experiences like this that is rarely discussed in medical spaces.

When a procedure is performed that a patient did not believe they had agreed to, the physical pain is only part of the impact. What lingers much longer is the psychological rupture that occurs when trust is broken in a vulnerable moment.

Medical procedures require surrender. A patient lies still while someone else approaches the most fragile parts of their body. They trust that the plan discussed beforehand is the plan that will be followed. That trust is not a small thing. It is the foundation that makes medical care possible.

When that boundary is crossed, something deeper than the body is affected.

For many patients, medical trauma does not begin in the hospital. It intersects with earlier experiences of powerlessness that shaped how safety and control were learned in the first place. When a person has already lived through moments in life where control was taken away from them, even subtle violations of consent in medical settings can reopen that psychological wound.

The body remembers what it feels like to lose control.

That moment in the procedure room did not just create pain in my spine. It created a feeling that the rules of safety had quietly changed without my knowledge. The plan had shifted while I was lying on the table, trusting that the conversation we had beforehand still mattered.

For someone who has spent years learning how to rebuild a sense of autonomy and personal boundaries, that experience can be deeply destabilizing.

Medical trauma is more common than most people realize. Research increasingly shows that patients who experience unexpected procedures, dismissive responses to pain, or violations of consent often carry long lasting psychological effects. Anxiety around future care. Hypervigilance during procedures. Difficulty trusting physicians even when they are trying to help.

What happened that day changed how I approach medicine.

But it also forced something important to grow.

For most of my life I tried to be the cooperative patient. The agreeable one. The person who trusted that the professionals knew best and that my role was simply to endure whatever was necessary to find answers.

That approach no longer works for me.

Living through experiences like this has required me to develop something stronger than cooperation. It has required boundaries.

Clear questions. Written documentation. Slower consent. The willingness to stop care when trust is broken. The courage to leave institutions where my voice is not respected.

Those boundaries were not something I naturally carried before this journey. They are something that had to be built through painful experience.

And in time, the medical picture around my spine became clearer.

Years later imaging would confirm what my body had been trying to communicate all along. A cerebrospinal fluid venous fistula in my thoracic spine. Perineural cysts throughout my spine. Fragile nerve root structures that can react intensely to procedures that are routine for most patients.

Knowing that now reframes that moment in the procedure room.

The concerns I had about spinal injections were not irrational fears. They were early instincts about a structural problem that had not yet been fully discovered.

Ironically, the same experience that created one of the most violating chapters of my medical journey also became a turning point in how I advocate for myself.

I still believe deeply in medicine. I have met extraordinary physicians who listen, who collaborate, and who treat patients as partners in the process of healing.

But trust must be mutual.

Consent must be real.

And when patients say that certain procedures feel unsafe for their bodies, that concern deserves to be taken seriously.

Especially when the patient has already lived through enough moments of powerlessness to know exactly what that feeling means.

Sketchbook Reflection

This drawing was inspired by an image I originally saw on Pinterest. The concept is not my own, but the interpretation and meaning behind it became personal as I sketched it. It lives in my sketchbook among many quiet drawings from a time when I was trying to understand what was happening inside my body.

During that period of my medical journey, my mind and heart often felt like they were being pulled in different directions. I was searching for answers while also trying to emotionally survive the uncertainty, the pain, and the medical experiences that often left me feeling powerless. Drawing became one way to process those feelings.

At the time I created this sketch, I did not yet have confirmation of the structural problems in my spine that would eventually be discovered. Later imaging would reveal a cerebrospinal fluid venous fistula and perineural cysts throughout my spine, helping explain why my brain, body, and emotions had felt so unsettled for so long.

Looking back at this piece now, I see it as a snapshot of that moment in time. A reminder of how deeply the experience of illness can affect both the brain that tries to make sense of it and the heart that carries its emotional weight.

Over time, my understanding shifted. What once felt like invisible strings of control began to look more like the quiet presence of something steady guiding me through the chaos. I titled it, “God is the Ultimate Puppeteer.”

Moving Forward

Even now, I am still processing the psychological impact of those experiences.

Medical trauma does not disappear the moment a diagnosis is finally found. The body remembers what it felt like to be dismissed, misunderstood, or treated as though its pain was imaginary. When those experiences intersect with mental health history, the effect can be even more destabilizing. The very support systems meant to help a person heal can sometimes become the lens through which their physical suffering is minimized.

In the years since these events, I have often revisited the evidence I kept during that time. Videos recorded in the middle of the night when the pain was escalating. Photos documenting changes in my body that I did not yet have words for. Notes, timelines, and medical records that helped me track what was happening when no one else seemed to see the pattern.

At the time, those recordings were simply acts of survival. I needed proof that what I was experiencing was real.

Looking back now, they have become something else. Documentation. A record of a body trying to communicate what medicine had not yet understood.

Those files tell the story of a patient navigating pain, fear, and uncertainty while trying to advocate for herself in systems that were not always prepared to listen.

And this story is only one chapter.

It represents just a few moments within a three-year journey of searching for answers, enduring procedures, confronting bias, and slowly learning how to rebuild trust in my own voice.

My hope in sharing it is not to assign blame. It is to invite reflection.

Patients with complex or rare conditions often arrive in medical spaces carrying layers of history. Physical pain. Emotional exhaustion. Sometimes psychiatric care that was meant to support them but instead becomes a label that shapes how their bodies are interpreted.

What we need from medicine is not perfection. We need curiosity. Careful listening. And a willingness to investigate when a patient says something has changed in their body.

Because sometimes the story a patient is telling is not a psychological one.

Sometimes it is a neurological one that simply has not been discovered yet.

And sometimes the difference between dismissal and discovery begins with the decision to take that story seriously.

Where Things Stand Now

Today, the picture of my spine looks very different than it did during those early years when I was searching for answers.

Imaging has now confirmed that I have diffuse perineural cysts throughout my spine, along with dural ectasia affecting the sacral region of the spinal cord. I underwent Tarlov cyst surgery to address cysts at S2, S3, S4, and S5, and during that procedure the sacral dural ectasia was also treated as part of the repair.

There is also a longstanding injury in my cervical spine that continues to be evaluated.

More recently, physicians identified a cerebrospinal fluid venous fistula, a rare type of spinal CSF leak that can cause profound neurological symptoms when spinal fluid drains where it should not. That discovery has helped explain many of the symptoms that once seemed disconnected and mysterious.

For the first time in this journey, the pieces of the puzzle are beginning to align.

I now have an upcoming procedure intended to seal that leak. My hope is simple. If the procedure is successful, it may allow my brain and spine to stabilize enough that I can remain upright longer, regain some strength, and slowly return to the creative work and advocacy that have carried me through this experience.

I do not expect everything to return to the way it was before. But I do hope for more time in the world outside of bed. More time with my family. More time creating. More time helping others navigate the kinds of medical systems that so many patients struggle to be heard within.

Because if this journey has taught me anything, it is that stories like mine are not rare.

And the future of patient care will depend on how willing we are to listen to them.

I am hopeful that this next procedure will allow my body a little more stability and a little more time upright in the world. Enough time to create, to advocate, and to help make sure that patients who come after me are listened to sooner than I was.

A Kinder Rewrite for the Doctors Who Care for Patients Like Me

I know that medicine is not easy.

Emergency rooms are busy. Pain is difficult to measure. And when a patient arrives with complex symptoms, incomplete answers, and a long history of medical notes, it can be hard to know where to begin.

I also understand that mental health histories appear in charts for good reasons. Many patients need that care and deserve it.

But I hope my story offers a gentle reminder of something important.

When a patient says that something has suddenly changed in their body, especially after a procedure, that moment deserves curiosity.

Not every unusual symptom is psychological.
Not every anxious patient is exaggerating.
And not every complex story is a sign of instability.

Sometimes it is simply a person whose body is trying to explain something that medicine has not yet discovered.

In my case, years later, imaging would show diffuse perineural cysts throughout my spine, sacral disease that required surgery, dural ectasia that had to be repaired, and a cerebrospinal fluid venous fistula that had been quietly altering my neurological function.

The story my body was telling was real. It just took time for the evidence to catch up.

Patients do not expect physicians to have every answer immediately. What we hope for is something simpler.

Careful listening.
Clear communication and documentation.
And the reassurance that when we say something feels wrong, that concern will be taken seriously.

Those small moments of curiosity can change the entire trajectory of a patient’s journey.

Because sometimes the difference between dismissal and discovery begins with a doctor who pauses long enough to ask one more question.

If sharing this story helps even one patient be heard a little sooner, or one physician pause long enough to listen more closely, then the pain that shaped it will not have been carried in vain.

It is a colored pencil piece, which means nothing about it happened accidentally. Colored pencil does not run unless you press it to. The blue and purple were layered deliberately, built slowly, pressed downward until they felt heavy enough to carry something real. I drew the melt before I redrew the structure.

At the time I shaded those colors, I believed I was illustrating the only language people around me seemed willing to hold. Blue and purple meant mental health awareness. Suicide prevention. Depression. Anxiety. Those were the conversations that surfaced most easily in rooms where I was trying to explain neurological instability I did not yet have proof for. Those were the explanations people understood.

I thought the drips represented what others were seeing.

I did not realize that blue is also the color used for cerebrospinal fluid leak awareness. I did not realize that purple is widely associated with rare disease advocacy. I was shading what felt visible, and unknowingly shading what was structurally true.

There is something almost funny about that now. The colors knew before I did.

For more than three years after a major highway collision, my symptoms escalated in ways that did not fit neatly into one category. Eventually I was diagnosed with symptomatic Tarlov cyst disease. Perineural cysts were documented along my spine. The severity of sacral involvement was confirmed during surgery in June 2025. Later imaging identified a thoracic cerebrospinal fluid venous fistula. There is now a plan to address it.

These are not common diagnoses. Most neurosurgeons do not operate on symptomatic Tarlov cysts. Expertise is concentrated in limited centers. Many patients travel across state lines seeking evaluation. I traveled almost 3000 miles away for the surgery I had to address the sacral region in June 2025. Rare disease does not mean nonexistent. It means uncommon enough that confirmation often takes time.

Before the structure was acknowledged, the narrative frequently defaulted to psychology. I could feel the subtle shift when I entered appointments. My psychiatric history arrived before I did. Depression. Anxiety. Longstanding therapy. Medication management. None of those things were untrue. But they were not the whole truth.

Living in that space, where intact bones are interpreted as intact systems, creates a peculiar dissonance. Herniated discs can be present without urgency. Nerve instability can exist without dramatic imaging. Cerebrospinal fluid dynamics can be abnormal without visible fracture. Rare disease often lives between visible catastrophe and invisible dysfunction.

When structural illness coexists with documented mental health history, nuance is required. Sometimes nuance is slow.

I am not interested in accusation. I am interested in integration.

Chronic neurological instability affects sleep. Sleep disruption affects mood regulation. Persistent uncertainty taxes the nervous system. Research consistently shows that individuals living with complex or rare medical conditions experience higher rates of anxiety and depressive symptoms. That is not weakness. It is physiology. It is adaptation to prolonged stress.

At the same time, it is possible for psychiatric framing to shape interpretation. That does not mean mental health care is invalid. It means human cognition is influenced by context. Once a narrative forms, it carries forward.

There were moments when I began to question myself. Not because I lacked insight, but because humans are relational. When authority speaks with certainty, it reverberates. When your lived experience feels outpaced by documentation, you start to wonder where the fault line truly is.

Art became the place where I did not have to negotiate that tension.

There was a season when I could not sit upright for long without symptoms escalating. My bed became my studio. Sketchbooks rested on blankets. Colored pencils stayed within reach. I learned how to shade at angles that did not aggravate my spine. I learned patience in smaller increments.

Art did not repair my nervous system. It did not close a CSF leak. It did not remove perineural cysts. But it regulated me. Repetitive hand movement calms the limbic system. Pattern building engages cortical focus. Layering pigment requires intention. You cannot rush colored pencil. It resists urgency.

In a body that felt unstable, art gave me rhythm.

When I left the center of the ribbon blank in 2024, I told myself I would eventually fill it in correctly. I did not know what correctly meant yet. I only knew the story felt incomplete.

This week I drew a zebra.

Rare disease communities use the zebra as a symbol because medical training encourages providers to think horses before zebras. That principle protects patients most of the time. But sometimes the hoofbeats really are a zebra. Sometimes uncommon is simply uncommon.

Drawing the zebra did not feel like vindication. It felt like recognition. A quiet acknowledgment that structural confirmation changes the tone of the conversation inside your own body.

Finishing the ribbon now does not feel explosive. It feels settled.

There was anger in the earlier layers. I would be dishonest if I denied that. The anger came from years of trying to translate myself, trying to explain why positional headaches were not simply anxiety, why neurological instability did not resolve with reassurance, why something felt mechanically wrong.

I do not feel that same urgency anymore.

Not because everything is perfect. Not because every system flaw has been corrected. But because there is structure now. There are images. There are surgical notes. There is a plan. There is a zebra.

The blue and purple drips remain. Mental health awareness remains. Suicide prevention remains urgent in rare disease communities. Living with prolonged uncertainty takes a psychological toll. That is real and deserves attention without stigma.

But the blank space is no longer blank.

It has context. It has architecture. It has integration.

On the back of the sketchbook page I wrote that the truth is found under the stigma. I wrote that I always knew something structural was causing my symptoms. I wrote in honor of CSF leak warriors, Tarlov cyst warriors, EDS warriors, and others navigating rare disease. I wrote about the need for systems that understand whole bodies rather than fragmented parts.

Finishing the ribbon feels less like proving something and more like closing a loop.

Rare disease is not rare to the families living it. Mental health is not separate from structural illness. When awareness is paired with research, humility, and compassion, it becomes more than a symbol. It becomes coherence.

The colors were there before I understood them.

Now they make sense.

For a long time, I was describing what I felt. A pressure in my head that did not behave like a migraine. A cognitive slowing that felt foreign to me. Words that would stall halfway through a sentence. Vision that kept changing even when I updated my prescription. A sense that something inside my skull was not stable, not anchored the way it used to be.

I was talking about symptoms.

Visions of Tomorrow-MJ Felt February 2026

This painting holds the feeling of hope returning slowly after a long medical storm. The soft blues and rising light represent the moment when clarity begins to replace confusion, and warmth pushes back against fear. It is not loud optimism — it is gradual sunrise. This is what it feels like to believe in a future again, even while still healing.

Symptoms are subjective. They live in the body of the person describing them. They require interpretation. They are easy to question. There is a particular kind of loneliness that comes from describing something that cannot yet be seen.

What changed the tone of my care was not my description. It was my imaging.

Before Tarlov Cyst surgery, my MRI carried a Bern score of 5. The Bern score is a radiologic system used to quantify imaging features associated with spontaneous intracranial hypotension, or chronically low cerebrospinal fluid volume. After surgery, that score dropped to 2. That shift was measurable.

At one point there was a subdural hematoma. That is documented. Over time, my pituitary measurements changed. That is documented. My vision shifted from minus 5 to minus 7. I now wear plus 2.5 progressive lenses. I have cataracts. That is documented.

What is not documented is a definitive statement that ties all of those changes together.

No one has said, this happened because of your CSF leak.

And I am not claiming that.

What I can say is that these changes were not present immediately after my accident. They appeared over time. They overlap with a prolonged period of low CSF physiology. I live in that overlap.

That space is complicated. It is emotional without being dramatic. It is uncertain without being imaginary.

When I started reading the medical literature, I was not trying to prove anything. I was trying to understand whether what I was living was even possible.

What I found was not certainty. It was plausibility.

Review articles on spontaneous intracranial hypotension describe how chronic low CSF volume can alter brain mechanics. They use the phrase brain sagging. They describe venous engorgement, subdural fluid collections, traction on pain-sensitive structures, and sometimes pituitary enlargement due to pressure shifts. They describe cognitive slowing and behavioral changes that can mimic psychiatric or degenerative disease. In rare but documented cases, patients were initially thought to have frontotemporal dementia before a spinal leak was identified and treated.

Those papers do not say this is exactly what happened to me. I understand that. But they do say that chronic low CSF can change how the brain sits and functions.

They say that subdural hematomas can occur in prolonged intracranial hypotension because stretched veins are more vulnerable.

They say that early recognition matters because chronic leaks are harder to manage.

That last sentence was echoed by my neurosurgeon. Chronic leaks are more complex than early ones. Not because anyone failed. Not because anyone was negligent. Because biology accumulates time.

The procedure I am preparing for is a transvenous embolization for a suspected CSF venous fistula. A CSF venous fistula is an abnormal connection where spinal fluid drains directly into a vein. These fistulas can be difficult to detect because they often do not produce obvious epidural fluid collections. They may require specialized imaging techniques that have only become widely recognized in the last several years.

At this major academic medical center, formal recognition and treatment of CSF venous fistulas has existed for approximately five years. My surgeon has performed this procedure around thirty times. That number reflects how new this field is. It does not frighten me. It tells me that medicine is still learning to see something that has likely been present for a long time.

When you bring up something that lives in emerging literature, you may be met with skepticism. Sometimes a smile. Sometimes a soft laugh. Sometimes the word rare.

Rare does not mean unreal.

Rarity Does Not Mean Unreal-MJ Felt. February 2026

This piece is my reminder that uncommon does not mean imaginary. For years, my symptoms were minimized because they were rare, complex, and hard to categorize. The gray tones represent that fog of dismissal, while the scattered light and color marks show truth breaking through anyway. This is what it feels like to reclaim reality after being told your experience is too unusual to be real.

One of the most destabilizing realizations for me was that it was not my symptoms that shifted the system. It was the imaging. It was the Bern score. It was the structural findings.

That is emotionally complex. Because the symptoms came first.

The reading I have done has not made me certain. It has made me careful. It has taught me that structural physiology can sometimes look psychiatric. That cognitive symptoms can be secondary to mechanical changes. That some of those symptoms improve when the underlying leak is treated. That vision changes, pituitary changes, and subdural findings live within the same intracranial ecosystem, even if causation is not always neatly assigned.

I do not know exactly which of my changes are directly attributable to a CSF leak. I do know that my brain imaging evolved over time. I know that my vision changed permanently. I know that my symptoms were present before the imaging made them visible.

And I know what it feels like to live in the gap between lived experience and radiologic proof.

A Kinder Rewrite to Myself

Original thought:
If my imaging had changed earlier, maybe I would have been taken seriously sooner.

Kinder rewrite:
Medicine often needs visible evidence before it shifts direction. That does not mean my early symptoms were invalid. It means physiology sometimes reveals itself slowly.

Original thought:
They should have known.

Kinder rewrite:
CSF venous fistulas have only been widely recognized in the last several years. The field is still evolving. I was living in that evolution.

Original thought:
I was dismissed.

Kinder rewrite:
My symptoms required time, imaging, and persistence to be fully understood. That journey was painful, but it does not erase the reality of what my body was doing.

If You Are Reading This Because You Are Struggling

If you have never heard of a CSF leak and are just beginning to suspect something is not right, you are not alone. If your imaging is normal but your symptoms are not, you are not foolish for asking questions. If you have been told it is stress and you are still searching, you are not dramatic for reading.

Chronic low CSF is not just a headache in some patients. It can affect brain mechanics. It can affect veins. It can affect cognition. It can create subdural collections. It can coexist with other conditions and complicate the picture.

Not every symptom is a leak. Not every leak causes every complication. But the literature makes clear that prolonged low CSF physiology is not benign.

If you want to read what I read, start here:

• Multidisciplinary consensus guidelines on spontaneous intracranial hypotension
• Review articles on brain sagging dementia and reversible cognitive syndromes related to CSF leaks
• Outcome studies on transvenous embolization for CSF venous fistulas
• Literature on superficial siderosis in persistent spinal leaks
• Imaging criteria and Bern scoring systems for intracranial hypotension

This is not an academic argument. It is a lived one.

My story is still unfolding. My procedure is still ahead of me. My vision changes are permanent. Some brain findings improved. Some questions remain unanswered.

What I know for certain is this: I was not imagining the shift. Even when the imaging had not yet caught up.

And sometimes, that is where advocacy begins. When people say “CSF leak effects on the brain,” the research is mostly talking about chronic low CSF volume or pressure (often discussed under spontaneous intracranial hypotension, SIH). Over time, that can change brain position, venous blood volume, and the layers around the brain. Here are the best-supported long-term brain effects that show up in the medical literature.

The Big Research Themes

What the literature consistently supports:

• Chronic low CSF volume alters brain mechanics
• Cognitive and behavioral symptoms can be secondary to structural change
• Some “psychiatric-appearing” symptoms are physiologic
• Many changes improve with appropriate treatment
• Persistent untreated leaks can carry progressive neurologic risk

What long-term CSF leaks can do to the brain

Chronic cerebrospinal fluid leaks do more than cause headaches. When CSF volume stays low over time, the brain’s mechanics and blood flow dynamics shift. Research over the last decade has clarified several important long-term effects. When people talk about “CSF leak effects on the brain,” the research is usually referring to chronic low cerebrospinal fluid volume, most often discussed under spontaneous intracranial hypotension. Over time, low CSF can alter how the brain sits in the skull, how blood volume compensates, and how surrounding structures respond.

The literature describes several long-term patterns.

First, brain sagging and traction on pain-sensitive structures. When CSF volume remains low, the brain can sit slightly lower than normal. This may stretch pain-sensitive tissues and cranial nerves. Imaging reviews consistently describe patterns of brain sagging along with compensatory venous changes.

Second, subdural fluid collections and hematomas. Prolonged intracranial hypotension can stretch bridging veins, making subdural collections more likely. This is a recognized complication in spontaneous intracranial hypotension discussions and one reason worsening symptoms are taken seriously.

Third, cognitive and behavioral changes that can look psychiatric. Chronic low CSF physiology can produce brain fog, attention and memory problems, and in rare cases behavioral syndromes that resemble primary neurodegenerative disease. Some recent studies describe mild cognitive impairment in patients prior to leak repair, with improvement afterward. The term brain sagging dementia has even been used in review literature to describe a potentially reversible dementia-like presentation linked to intracranial hypotension.

Fourth, venous congestion patterns. Because the skull is a fixed space, when CSF volume drops the body may compensate by increasing blood volume in the head. Imaging may show venous engorgement. Clinically, this can contribute to pressure sensations and complex symptom patterns.

Fifth, long-term complications in persistent spinal leaks. A subset of patients with chronic ventral leaks can develop superficial siderosis, a progressive neurologic condition caused by iron deposition from chronic bleeding into CSF spaces. Case literature emphasizes early treatment to reduce the risk of long-term neurologic decline.

Finally, course variability matters. Even after treatment, some patients experience relapse years later, while others may develop rebound intracranial hypertension after leak closure. These are part of the long-term landscape specialists monitor.

The larger themes across the literature are consistent:

Chronic low CSF alters brain mechanics.
Cognitive and mood symptoms can be secondary to structural physiology.
Some frightening cognitive presentations are reversible when the leak is treated.
Persistent untreated leaks may carry preventable long-term neurologic risks.

This is not abstract to me.

My procedure, which is less than a month away, is a transvenous embolization for a suspected CSF venous fistula, and it sits inside that evolving research. Larger outcome studies in recent years have shown significant improvement in imaging and quality of life after embolization in appropriately selected patients. These procedures were not widely recognized even a decade ago. They are part of medicine learning to see more clearly.

That does not mean every symptom is explained. It does not mean every outcome is guaranteed.

It means the gray space is not imaginary.

It is where lived experience and emerging science overlap.

And that is where many of us are still advocating.

If you’ve never heard of one, here’s the simplest explanation.

A spinal CSF leak happens when the protective fluid that cushions the brain and spinal cord escapes through a tear or weakness in the dura. When that fluid drops, the brain can literally sag downward. The hallmark symptom? Severe positional head pain; worse upright, better lying flat. Nausea. Neck pain. Cognitive changes. Weakness. Autonomic chaos.

It is not subtle.

And yet for three years, I was told:

• It’s psychological.

• It’s stress.

• It’s trauma.

• It’s somatic.

• You’re focusing on it too much.

• Your imaging is “fine.”

• Tarlov cysts don’t cause symptoms.

• Perineural cysts are incidental.

• There’s no evidence of a leak.

Except there was.

A Tarlov cyst neurosurgeon documented concern in my medical charts over a year ago.

I had textbook positional symptoms.

I had a significant neck injury after a highway collision with a semi; never documented.

I even had surgery on the sacral Tarlov (perineural) cysts in June 2025. Surgical findings during the operation were much worse than radiological imaging had identified. Recent imaging showed perineural cysts throughout my spine. Every level - both sides.

But once something enters your chart as psychological, it stains everything.

Every complaint is filtered through it. Every tear confirms it.

Every plea for pain relief, symptom management, and even neurological decline, was blamed on it.

I was eventually admitted to a psychiatric unit after 2 years of being denied adequate care and medical gaslighting, because unmanaged pain, severe lack of sleep, plus medical dismissal will break anyone.

Anyway, that part is harder to talk about.

There is something uniquely destabilizing about being in real physical pain while authority figures laugh, minimize, or suggest it is fabricated. It forces you to question your own reality. It fractures your internal compass.

That is not therapy. That is not healing. That is psychological torture.

And here’s the complicated part:

Now that the leak is being taken seriously, I am not relieved. I have an upcoming surgical procedure, and I am in writhing pain.

I had two invasive spinal procedures last week. My sacrum feels like it is on fire. My head pain rarely drops below an eight. I still cannot stay upright long. But even if relief ever comes, it doesn’t change the medical story.

• Relief does not erase three years of erosion.

• Relief does not restore lost trust.

• Relief does not give back the identity that was dismantled.

And yes — I am angry.

Angry that documented structural disease was dismissed. Angry that the reality of my symptoms were brushed off as inconvenient or too complex to be “real.”

Angry that dozens of medications were layered on instead of asking better questions, and that my kidney levels are functioning at an all time low. (And I won’t even discuss the impact it has had on my cardiac health, which is now being closely monitored.)

Angry that pain was treated as pathology of character instead of pathology of dura.

Anger, in this case, is not bitterness.

It is clarity.

There is a difference between mental health conditions and structural neurological disease. And conflating the two does real harm — especially to women, especially to patients with prior psychiatric history, especially to those who are articulate and emotional.

• We deserve differential diagnosis, not default psych referral.

• We deserve imaging review, not eye rolls.

• We deserve collaboration, not condescension.

• And most of all — we deserve to not have our reality rewritten in our own charts.

If you are in the middle of this — doubting yourself, being told it’s “just stress,” watching your symptoms worsen when upright — I want you to know:

• Your body is not hysterical.

• Your pain is not a personality flaw.

• Your persistence is not pathology.

• Sometimes anger is the nervous system reclaiming truth.

The Part No One Talks About

There’s another layer to this.

In order for the system to change, I still have to function inside it.

I still have to be the “good patient.”

Calm.
Reasonable.
Measured.
Not too emotional.
Not too desperate.
Not too informed.
Not too quiet.

Somewhere in the narrow lane between “hysterical” and “drug-seeking.”

And here’s the truth: I am in writhing pain right now.

The kind of pain that makes you nauseated.
The kind that steals sleep.
The kind that makes your body tremble when you try to stand.

But I hesitate to ask for more relief. And honestly, the neurologic flare in the post surgical area of my sacrum is the worst pain I have encountered in that area since surgery.

Because once your chart carries certain words — psychological, somatic, prior psychiatric admission — you are no longer just a patient in pain. You are a risk profile. You are scrutinized.

You measure your words.
You lower your voice.
You pre-explain that you don’t want narcotics, you just want to function.
You promise you won’t overuse.
You over-clarify.

You try to prove you are “safe.” It is exhausting to hurt and simultaneously manage how your pain is perceived.

And I hate that this experience taught me that.

I hate that I have learned how to soften my suffering so it won’t alarm anyone.
I hate that I’ve rehearsed how to ask for help without sounding like I need it too much.
I hate that I know exactly how addiction suspicion enters a room.

Kinder Rewrite: Structural vs Psychological

What I was told:
“It’s probably stress.”
“Your imaging looks fine.”
“You may be focusing on this too much.”
“With your psychiatric history, this could be somatic.”

What that sounds like underneath:
Your pain is not trustworthy.
Your body is exaggerating.
Your history makes you unreliable.

A Kinder Rewrite:
“It’s possible to have a psychiatric history and a structural neurological injury at the same time. One does not cancel the other. Let’s carefully rule out mechanical causes before we attribute this to stress.”

Why this matters:
Mental health conditions deserve thoughtful care.
Structural neurological disease deserves rigorous investigation.

When we confuse the two, patients don’t just suffer physically.
They begin to doubt themselves.

And self-doubt in the middle of neurological pain is destabilizing.

The goal isn’t to reject mental health.
The goal is diagnostic integrity.

Throughout the gaslighting and blatant documentation that revolves around mental health and women’s health bias and stigma, I have had to dig down deep and learn something even deeper than rewriting what I wish the medical professionals would have asked rather than assumed.

I’ve had to learn something else…

I have learned that being a decent patient does not mean erasing yourself.

It means staying steady even when you are shaking.
It means documenting carefully.
It means asking clearly.
It means advocating without burning everything down.

Right now, I am in the severe waiting period.

Waiting for procedures.
Waiting for healing.
Waiting to see what damage is reversible and what is not.
Waiting to learn what my new normal will be.

And that is the hardest part — the uncertainty.

Because I don’t know how much of this will resolve.

I don’t know how much permanent change my body will carry.

I don’t know what strength will look like six months from now.

But I do know this -having answers matters for sanity.

Even if being right didn’t protect me.
Even if it didn’t prevent damage.
Even if it didn’t spare my family the strain.

This has impacted them more than I can put into clean sentences.

My children have watched their mother lie flat in dark rooms.
They have learned the difference between “Mom’s headache” and “Mom can’t stand up.”
They have adjusted. Quietly. Bravely.

My husband has carried things I used to carry.
Schedules.
Noise.
Logistics.
The invisible labor of daily life.

Chronic illness does not just injure one body.
It reorganizes a household.

It changes tone.
It changes patience levels.
It changes finances.
It changes plans.

And I grieve that.

I grieve the years they had to watch me doubt myself.
I grieve the tension that dismissal created in our home.
I grieve the identity I lost in the middle of fighting to be believed.

But here’s the part I’m trying to hold onto, even while I’m angry:

This is still better than not knowing.

Truth, even painful truth, is stabilizing.

If there is long-term damage, I will face it honestly.
If there is healing ahead, I will meet it gratefully.
If my baseline changes, we will adapt as a family.

Anger is loud right now.

But underneath it, there is something quieter:

Relief that I was not imagining it.
Relief that my body was telling the truth.
Relief that my children will see that persistence matters.

In the long run, this path — the difficult, documented, evidence-based one — is better for my health and for my family.

Even if it took too long.

Even if it cost too much.

Right now I am still in excruciating pain.

But I am no longer in doubt.

And that, for today, is enough.

If you’re unfamiliar with spinal CSF leaks or Tarlov cyst disease, I encourage you to read before forming opinions. These are documented neurological conditions with established diagnostic criteria and treatment pathways.

For readers who want to understand the medical conditions I’ve discussed — including spinal CSF leaks, Tarlov cysts, and related structural neurological issues — here are reputable resources with clear explanations, clinical context, and diagnostic information:

If You Want to Learn More about Tarlov Cyst Disease

• National Institute of Neurological Disorders and Stroke – Tarlov Cysts
A reliable overview from a major U.S. neurological institute, explaining what Tarlov cysts are, how they form, and common symptoms.
https://www.ninds.nih.gov/health-information/disorders/tarlov-cysts?utm_source=chatgpt.com

• Cleveland Clinic – Tarlov Cyst: What It Is, Causes, Symptoms & Treatment
Patient-friendly medical information about Tarlov cysts, how they impact the spine and nervous system, and treatment considerations.
https://my.clevelandclinic.org/health/diseases/tarlov-cyst?utm_source=chatgpt.com

• American Association of Neurological Surgeons – Tarlov Cyst
Neurosurgical perspective on Tarlov cysts, including symptoms, diagnosis, and when surgical evaluation may be appropriate.
https://www.aans.org/patients/conditions-treatments/tarlov-cyst/?utm_source=chatgpt.com

• Tarlov Cyst Disease Foundation – Information & Resources
Patient-oriented explanations about perineural cysts, causes, symptoms, and support for those navigating diagnosis and care.
https://www.tarlovcystfoundation.org/info/?utm_source=chatgpt.com

• NCBI / StatPearls – Tarlov Cysts: Symptoms, Diagnosis & Management
Medical text summary covering clinical features, work-up and management strategies for Tarlov cysts.
https://www.ncbi.nlm.nih.gov/books/NBK582154/?utm_source=chatgpt.com

If You Want to Learn More About Spinal CSF Leaks

For clear, reputable medical information on spinal cerebrospinal fluid (CSF) leaks — how they happen, symptoms, diagnosis, and treatment — here are trusted resources:

• Mayo Clinic – CSF Leak (Overview & Symptoms)
A medical overview from a major clinical institution explaining what a CSF leak is, how it occurs, and the symptoms, including the characteristic positional headaches of spinal leaks.
https://www.mayoclinic.org/diseases-conditions/csf-leak/symptoms-causes/syc-20522246?utm_source=chatgpt.com

• Spinal CSF Leak Foundation – About Spinal CSF Leaks
A nonprofit resource devoted to spinal fluid leaks, including explanations of intracranial hypotension and how spinal CSF leaks affect brain and nervous system function. https://spinalcsfleak.org/?utm_source=chatgpt.com

• Cleveland Clinic – Cerebrospinal Fluid (CSF) Leak
Patient-focused overview from a major medical center on the causes and symptoms of CSF leaks, including spinal types.
https://my.clevelandclinic.org/health/diseases/16854-cerebrospinal-fluid-csf-leak?utm_source=chatgpt.com

• NCBI / StatPearls – CSF Leak Medical Summary
A clinical summary on CSF leaks, including how cerebrospinal fluid escapes through dural tears and why that causes symptoms such as headache and neurological changes.
https://www.ncbi.nlm.nih.gov/books/NBK538157/?utm_source=chatgpt.com

• Cedars-Sinai Health Library – CSF Leak Diagnosis & Treatment
Detailed explanation of how CSF leaks are diagnosed (including imaging tests) and treated, including conservative measures and procedures such as epidural blood patches.
ht

https://spinalcsfleak.org/2024-leavitt-physical-emotional-wellbeing/

Not right away.
Not rudely.
Often with genuine hope in their voice.

“When do you think you’ll be able to get back to softball?”

At first, I answered politely.
Then vaguely.
Then I stopped answering at all.

Because the truth was complicated.
And exhausting.

Because the question was never really just about softball.

It was about returning to form.
Returning to usefulness.
Returning to a version of me that didn’t require accommodation.

Softball was just the socially acceptable way to ask.

The truth was that I had hit a semi at highway speed.
That my head was turned when the airbag deployed.
That my neck didn’t just get “sore,” it was injured permanently.
That my body didn’t bounce back. It restructured itself around survival.

But there was another truth I didn’t know how to say out loud yet.

I already suspected softball wasn’t coming back and not because I hadn’t tried.

Two years ago, I picked up a bat. Carefully. Stubbornly. Hopefully. I did what I had always done before—trusted muscle memory, ignored fear, believed grit would carry me through.

I swung.

And I went straight to the ground.

Jolting pain shot down my entire spine, electric and unmistakable. Not soreness. Not strain. A full-body warning. The kind that doesn’t argue—it ends the conversation.

In that moment, my body told me something my mind didn’t want to hear.

Twisting wasn’t safe.
Lifting wasn’t safe.
Bending wasn’t safe.

Not now.
Maybe not ever.

Years later, imaging finally gave language to what my body had already been grieving.

Perineural cysts—also called Tarlov cysts—were found running along the entire right side of my spine. These are fluid-filled sacs that form along the nerve roots, often after trauma, when spinal fluid is forced into the nerve sheath itself. In some people, they remain quiet. In others, they multiply, press on nerves, and make ordinary movement dangerous.

They are poorly understood.
Often dismissed.
And rarely treated with urgency.

Now I am waiting for a myelogram of the left side of my spine. Waiting to see what else has been there all along. Waiting to learn how much of my body has been compensating without my consent.

That knowledge did not just interrupt a hobby.

It rearranged my sense of safety.

And it made the question “When will you be back?” feel almost surreal—because the ground beneath that question no longer existed.

What people could not see was that I had played through pain before.

Stress fractures.
Shattered fingertips.
A concussion so hard the laces were imprinted into the bruise.

Pain had never been the deciding factor.

This was different.

This was structural.
Neurological.
A nervous system saying if you keep going like this, you will lose more than a game.

So when people asked “When will you be able to play again?” my body heard something else.

So this is temporary, right?
There is a timeline, right?
You will push through like you always do, right?

I was not grieving softball.

I was grieving certainty.

I was grieving the version of my body that did not need to justify rest.
The version of me that could plan instead of calculate.
The version of my life that did not revolve around appointments, symptoms, and recovery windows that kept moving.

Somewhere along the way, the question picked up an undertone.

At least you survived.
At least it was not worse.
At least you will play again someday.

And while I am grateful to be alive—truly—that gratitude started to feel like a gag.

Because being grateful for survival does not mean I am not allowed to be angry about what it cost.

I did not lose softball because I gave it up.
I lost it because my body absorbed a force it should not have had to.

That distinction matters.

What I wish people had asked instead was not really about sports.

What does your body need right now?
What changed that you are still carrying?
Do you want to talk about what you had to let go of?

Not because I always wanted to answer—but because those questions do not rush healing. They do not ask me to skip ahead to a version of myself that has not arrived yet.

A Kinder Rewrite

Because language matters—and because most people were not trying to hurt me—here is the rewrite I wish we had shared.

Instead of
“When are you going to be able to play softball again?”

Try:

“I know your recovery has been complex. How are you doing lately?”
“I imagine some things had to change. What has that been like?”
“You do not have to have a timeline. I just wanted to check in.”

These questions do not assume a finish line.
They do not treat healing like a detour.
They leave room for answers that change.

Where I Am Now

I am learning that acceptance does not come from forcing gratitude.

It comes from letting anger and grief sit at the table without being scolded.

Because the question was never really just about softball.

It was also:

When will you work again?
When will you drive again?
When will you walk without thinking about it?

When will your life look useful again?

We rarely ask those questions out loud. But they hover. And they carry the same expectation—that endurance is virtue, that sacrifice is love, that a good woman will keep giving until there is nothing left to give.

Especially when she is capable.
Especially when she has always been strong.
Especially when she has played through pain before.

I was taught—implicitly and relentlessly—that rest needs justification. That limits are negotiable. That if I can still show up, I should. That my worth is measured by how much I can carry without complaint.

But my body has been teaching me something truer.

That care is not selfish.
That listening is not weakness.
That honoring limits is not failure. It is wisdom.

I can be thankful I survived and still be devastated by what I lost.

I can accept what is without surrendering my right to grieve what is not.

And if I ever play softball again—or work the way I used to, or drive freely, or move without calculating risk—it will not be because I sacrificed myself back into shape. It will be because my body decided it was safe. Or because I learned how to live well inside a different kind of strength.

Either way, I do not owe anyone a timeline.

And neither does anyone else whose body has asked them to stop.

When pain is constant and neurological symptoms stack on top of each other, the first thing to erode isn’t happiness or optimism, it’s cognition. Your thinking narrows. Your tolerance shrinks. Your world becomes very small and very loud inside your head.

I want my mind back because I can feel what chronic pain and neurological strain are doing to it.

A little history, because it didn’t start yesterday

Three years ago, I was in a high-speed collision with a semi. It wasn’t subtle. It wasn’t minor. And while I walked away upright after being medically evaluated, my nervous system clearly didn’t.

At the time, I did what a lot of people do. I adapted. I pushed through. I trusted that things would settle. I had spent a decade of my life as a teacher, was used to managing chaos, pain, noise, and long days. Endurance was familiar territory.

When I eventually changed careers and went back to school for nursing, I thought I was starting a new chapter. I graduated at 38 — fresh out of college again, with my fourth degree — which still makes me laugh in a darkly practical way. Apparently I enjoy reinvention.

That nursing career was barely underway before my body intervened. In fact, I was on my way to my full-time RN gig, only a couple of months in, when the crash happened.

What accumulated quietly

Over the years following the accident, symptoms stacked in ways that didn’t fit tidy explanations.

Positional headaches.
Neuropathic pain.
Pelvic and leg symptoms.
Pressure. Fatigue. Cognitive strain.

Imaging eventually revealed perineural cysts along nerve roots — often called incidental, even when symptoms line up uncomfortably well. For a long time, mine were watched, minimized, or framed as unlikely to be causing real problems.

Until surgery proved otherwise.

Surgical findings confirmed that these cysts were not passive. They were interacting with nerves and surrounding structures in ways that explained years of symptoms. The surgery helped — enough to give me a window of relief, function, and mental clarity. Enough to remember what it feels like to think without pain constantly crowding the edges.

That window mattered.

Where things stand now

Symptoms have returned, though not identically. I’m now awaiting further neurological testing to investigate possible cerebrospinal fluid abnormalities and pressure-related issues.

These tests require endurance — long drives, prolonged positioning, and physical tolerance — at a time when being upright or lying flat for extended periods can trigger severe symptoms. The irony is not lost on me.

Between appointments, I manage pain at home with medication, heat, ice, pacing, nerve stimulation, and rest. Emergency care has not historically helped, and experience has taught me that showing up visibly unwell does not always lead to being believed.

So I wait. And I cope. And I try to protect my mind.

The medication and mental health piece I’m not hiding

Chronic pain doesn’t exist in isolation, and neither do the medications used to treat it.

Some medications help one symptom while worsening another — cognitive dulling, emotional flattening, agitation, or intrusive thoughts. Others interact with anxiety, depression, or trauma histories in ways that are rarely acknowledged out loud.

I’ve navigated prescribed medication that helped pain but destabilized my mental health, and others that preserved my mind while leaving my body struggling. That balancing act requires constant self-monitoring and adjustment. It is work. And it is exhausting.

Naming mental health impact does not mean the pain is psychological. It means the brain and nervous system are involved, as they always are.

The language that makes waiting heavier

One phrase I’ve heard often is:

“These cysts are usually incidental.”

Why it sounds reassuring:
It suggests most people are fine and that concern may be unnecessary.

Where it becomes gaslighting:
It disconnects imaging from symptoms without curiosity. It implies that common findings cannot cause uncommon suffering. It quietly shifts the burden of proof back onto the patient, who is already managing pain, side effects, and uncertainty.

A kinder rewrite:
“Perineural cysts affect people differently. Given your symptoms and surgical findings, it makes sense to take this seriously and continue investigating how they may be contributing.”

Another phrase that has followed me for years:

“Let’s just watch and wait.”

Why it sounds reasonable:
It implies caution, patience, and careful monitoring.

Where it becomes gaslighting:
Waiting is not neutral when symptoms are progressing. Watching and waiting for three years after a high-speed accident, through career disruption, escalating pain, and now surgical confirmation, stops being conservative care and starts becoming neglect.

A kinder rewrite:
“We’ve been observing this for a long time, and I recognize that waiting has had real consequences. Let’s talk honestly about what continued waiting costs — and what options exist when observation is no longer serving your quality of life.”

Why I’m writing this now

I’m writing because pain narrows the internal world, and I don’t want that narrowing to define me.

I’m writing because language shapes care, and careless phrasing can undermine trust faster than most people realize.

And I’m writing because today is a bad pain day, and I feel unheard. Naming that doesn’t weaken this piece — it explains why it exists.

I want my mind back.
Not as a metaphor.
Not as a punchline.

I want it protected, respected, and believed — even while my body remains complicated.

If you’re reading this while waiting, adapting, or quietly enduring, the time counts. The losses count. The clarity you’re fighting to preserve still matters.

I’m still here.
Thinking when I can.
Writing when it helps.
Holding onto my mind as carefully as I know how.

Today, a long-standing concern I’ve been raising for years was finally confirmed. I was diagnosed with a moderate to advanced bladder prolapse, a condition where the bladder loses structural support and shifts downward, often causing pressure, leakage, and symptoms that worsen with standing or movement. It’s a physical, mechanical issue . Over the past couple of years of telling primarily male doctors about my concerns to no avail. Just this week I found out they were not imagined, and not caused by anxiety, motherhood, or not doing enough Kegels. I mean I knew the truth. I can feel the changes. My pelvic floor physical therapist confirmed it first. And it’s not just my bladder either, so it didn’t happen overnight. Rectocele and cystocele as well. Gravity has been beating up my (suspected) connective tissue disorder for years.

What stayed with me wasn’t just the diagnosis, but the quiet grief of realizing how long it took to reach it. For years, I adjusted my life around symptoms that were minimized or normalized. When concerns like this are brushed aside, it slowly teaches people to doubt their own bodies. Validation brings relief, but it also brings mourning for the time spent unheard. And to top it off, it’s not just my bladder. It’s the other pelvic organ systems as well, which require other specialists. It is going to require further specialists, further treatments, another surgery. I’m 42, and dealing with the incontinence and lack of control of these organs over the past couple of years is a really tough pill to swallow. There is something about losing control of the way “normal” bodies function-especially when we are talking about the functioning of our “private areas.” It’s such a taboo topic for so many people.

If you’ve ever felt dismissed while your body kept asking for care, you’re not alone. Sometimes being believed arrives gently, and still can change everything.

— MJ Felt

This is a Kinder Rewrite series about medical language. This series is for anyone who was told to wait, minimize, normalize, or endure—when what they needed was curiosity, listening, and care. This is a Kinder Rewrite series about medical language.
I am beginning with phrases patients often hear when their symptoms do not fit neatly into time limits, checkboxes, or expectations.

This series is for anyone who was told to wait, minimize, normalize, or endure, when what they needed was curiosity, listening, and care.

These rewrites are not about blaming individual doctors.
They are about examining how certain words, said casually and repeatedly, can create shame, delay care, and teach people to doubt their own bodies.

If you have ever heard this from a doctor, you may also recognize the quiet feeling that follows, you have probably also felt the twinge of feeling unheard or dismissed.

• “Well… you’ve had three kids.”

• “That’s just (peri-)menopause.”

Why It Sounds Dismissive (Even If Unintentional)

These phrases are often said casually, as if they explain everything. They rely on common experiences like childbirth and aging to shortcut deeper investigation.

Where Shame Creeps In

This language quietly teaches patients to expect loss of function as the cost of living in their bodies. It implies that symptoms are normal, inevitable, or not worth pursuing. Overtime, this kind of dismissal trains women to stop trusting their own bodies and to stop speaking up.

The Kinder Rewrite

“Your history of childbirth and hormonal changes gives us important context, but it doesn’t automatically explain your symptoms.”

Why This Matters

Being told “this is normal” should never mean “this is acceptable.” Let’s be honest…normalization without evaluation isn’t reassurance. It is erasure.

And ‘normal for women’ should never mean ‘not worth treating.’

I have spoken to so many of my friends and relatives, and have witnessed and am currently experiencing significant health problems due to these very comments and dismissals. I am still working through finding the best ways to respond to dismissive comments from medical professionals. I am trying to personally explore my boundaries and want to give future patients the opportunity to respond in ways that counteract the dismissive tone and biases of medical professionals. So, here are some responses that can be used to advocate for yourself and your health in this situation.

Kinder, Clear Responses (Low Energy)

Use these when you’re exhausted but need the record corrected.

• “I understand that can be a factor. What I’m describing is a change from my baseline.”

• “I’m not asking whether this is common; I’m asking whether it’s been fully evaluated.”

• “This is affecting my daily function. What are the next steps to assess it?”

Kinder but Firmer (Redirecting the Conversation)

These gently move the doctor out of dismissal and into responsibility.

• “I’ve been reporting these symptoms for years. What might explain the progression?”

• “Can you help me understand why this wouldn’t warrant further evaluation?”

• “What would be different if I hadn’t had children?” (It exposes bias without accusation.)

Boundary Statements (For the Medical Record)

Short, neutral sentences that matter because they get charted.

• “I’d like it noted that I’ve raised these concerns multiple times prior to today.”

• “I don’t feel reassured by this explanation alone.”

• “I’m requesting further evaluation or a referral.”

• “I want to be sure we’re not attributing everything to gender or age without ruling out structural causes.”

Normal life stages shouldn’t automatically exclude pathology. And this happens a lot in health care. And it is costing individuals their health.

What I Wish Providers Understood

Most patients are not looking to be dramatic, difficult, or reassured. They are trying to translate bodily signals into language quickly, under stress, often while in pain or fear. When familiar phrases are used to move things along, even kindly, they can unintentionally close the door to curiosity.

Shame-based language does not usually sound harsh. It sounds efficient. It sounds like normalization, reassurance, or experience talking. But when symptoms persist, worsen, or do not fit expectations, those words often teach patients to doubt themselves and delay care. What helps instead is slowing the exchange just enough to ask better questions, to name uncertainty honestly, and to treat a patient’s concern as data rather than exaggeration.

What Helps Instead

(Especially for Patients With Trauma Histories)

Trauma changes how the nervous system processes language, authority, and uncertainty. Many patients are not reacting to the present moment alone, but to a history of not being believed, being rushed, or having their boundaries crossed. What helps is not perfection, but predictability, transparency, and choice.

Simple shifts in language can lower threat responses. Naming what you are doing before you do it. Asking permission even when consent seems implied. Explaining uncertainty instead of masking it with reassurance. Phrases that acknowledge effort, signal curiosity, and keep the patient oriented in time help rebuild trust and reduce dissociation.

Most importantly, trauma-informed care slows the moment just enough for the patient to stay present. When language invites partnership rather than compliance, patients are more able to share accurately, tolerate exams, and remain engaged in care.

What De-escalates

De-escalation often comes from orientation and choice. Naming what is happening, explaining transitions, and acknowledging uncertainty help patients stay grounded. Small permissions matter. Asking before touch, checking readiness, and allowing the pace to slow can reduce threat more effectively than reassurance.

When language reflects curiosity rather than conclusion, patients feel partnered instead of managed. Consistent, predictable communication builds trust over time and often leads to calmer bodies, clearer histories, and more effective care.

Conclusion

Patients and medical professionals are not opposing sides. Most harm happens in the space between them, inside a system that prioritizes speed, documentation, and risk management over communication and understanding. When language breaks down, trust erodes, symptoms escalate, and everyone loses time and clarity.

Better care is not about perfection or blame. It is about learning how words land in bodies under stress and how small shifts in communication can change outcomes. When patients are treated as partners and providers are supported in practicing curiosity rather than efficiency alone, care becomes safer, more accurate, and more humane. The system may be deeply flawed, but clear, respectful communication is one place where real repair can begin.

“You just have to push through.”

Why It Sounds Encouraging

This phrase is usually meant to express confidence in someone’s strength and to offer motivation during a hard moment. Many people learned it as a survival skill, and they share it because it once helped them keep going.

Where Shame Creeps In

When “push through” is used in situations involving chronic illness, trauma, or ongoing stress, it can quietly place responsibility on the person who is already struggling. If pushing doesn’t lead to improvement, or makes things worse, the message can start to feel like a personal failure rather than a physical or situational reality. Over time, this language can blur boundaries and teach people to override pain, exhaustion, or limits in order to stay connected or appear capable.

A Kinder Rewrite

“You don’t have to push past your limits to prove strength. It’s okay to listen to what your body and mind can realistically handle, and we can take this one step at a time.”

Why This Matters

Language that frames endurance as the solution can undermine boundaries and teach people to ignore their own limits to maintain connection.

Clear boundaries help people stay connected without causing harm.

If someone says “You just have to push through,” here are responses that protect connection and limits:

• “I know you mean well. Pushing through actually makes this worse for me, so I’m choosing a different approach.”

• “That works for some things, but right now listening to my limits is what helps.”

• “I’m not giving up — I’m pacing myself.”

• “Rest and adjustment are part of how I get through this.”

• “I don’t need motivation right now. I need support that respects my limits.”

Sometimes, when language starts to feel strained or incomplete, it helps to pause and ask: Is there a kinder way to say this? Not a better argument. Not a louder opinion. Just words that leave more room for everyone.

And let’s face it. There is a lot going on in our country, the world, and our communities right now. But when people turn societal fears and concerns about what is happening into a simple “just don’t expose yourself to it” attitude, usually that wraps up the conversation. And let’s face it - political matters have already caused a huge divide in our country, which has in turn caused division in relationships around us. It’s a sticky subject, and I am just going to leave it at that for right now.

Why It Sounds Encouraging

This phrase is often offered as a way to protect mental health and reduce overwhelm. It can come from genuine concern. It often comes from a desire to help someone breathe, rest, or step away from constant crisis.

Where Shame Creeps In

When people are deeply affected by what’s happening socially or politically, “turn it off” can quietly suggest that caring is the problem. It can make distress feel like a personal weakness instead of a reasonable response to real uncertainty, harm, or fear. Over time, this language can discourage people from processing what they’re witnessing or from talking honestly about how it’s impacting them.

A Kinder Rewrite

“It makes sense that this feels heavy. You don’t have to shut it out to protect yourself. We can talk about what you’re carrying and figure out what support looks like right now.” Instead of asking someone to turn away from what’s hurting, we can offer permission to engage gently.

Why This Matters

When concern is treated as something to avoid, people lose the chance to process fear together and stay grounded in connection.

Clear boundaries help people stay connected without causing harm.

If someone says, “Just turn off the news,” here are some responses that protect connection and limits:

• “I’m trying to pace how much I take in, not ignore what’s happening.”

• “Staying informed matters to me, even if I need breaks.”

• “This affects my sense of safety, so I need space to talk about it.”

• “Avoiding it completely actually makes my anxiety worse.”

• “I’m choosing balance, not disconnection.”

Sometimes, when language starts to feel strained or incomplete, it helps to pause and ask: Is there a kinder way to say this? Not a better argument. Not a louder opinion. Just words that leave more room for everyone.