Holding Healthcare Accountable as a Patient

Accountability”—that tidy word Merriam-Webster offers up as an obligation or willingness to accept responsibility for one’s actions—has threaded itself through the past weeks, stitching tight seams through my days at a new infusion center, where I’ve spent time each week receiving my new line of treatment, Taxol.

When I knew IV treatment would soon redraw the map of my time, multiplying appointments until they crowded out the margins of my life, I chose proximity. I chose a center closer to home. In a world where time itself becomes a toxin—dripping away quality of life in waiting rooms and infusion chairs—that choice felt necessary, almost urgent. I am acutely aware of the privilege of options, how geography can soften or sharpen the burden.

But proximity does not equal ease.

A new place asks for new fluency—new rhythms, new faces, new unspoken rules. There are always the hidden levers, the insider knowledge never written down, the quiet choreography of a system that expects you to learn by stumbling into invisible walls. Even a simple orientation to workflow—what happens when, who does what, why things are scheduled the way they are—could turn confusion into steadiness, but, as usual, this information is only achieved by experience. Still, I am grateful for the few who paused long enough to answer my questions, to explain the “why” behind the machinery.

But I digress.

Three challenges surfaced during my first few weeks—three “small” storms that demanded far more energy than I had to give. Each one arrived uninvited, each one rearranged my days, pulling me away from meetings, from deadlines, from the fragile order I try to maintain. My to-do list sits unfinished, a quiet testament to what it cost to address them.

The first was bureaucratic — A prior authorization never properly obtained for a pre-medication, the anti-nausea drug standing between me and hours of relentless sickness. When the denial notice came, I did what years of illness have trained me to do: I carefully read the initial and second denial from my insurance company. Then, I contacted the new center. I came prepared—with history, with knowledge, with the fine print of an insurance contract etched into memory. And still, I was met with disbelief, then resistance, then silence.

Most patients, perhaps, do not wade into these waters. But I do. I have had to. For nearly nine (9) years, I have learned the language of my own survival. It startled me that my fluency was not seen as an asset, but as an inconvenience. I received the medication for the three infusion, but only those. A temporary permission, a partial reprieve. But the cost was real: nights of fractured sleep, a rising tide of anxiety before my third infusion, a body bracing itself for a storm that might have been avoided.

Unnecessary stress.
And no one held it.

The second challenge cut deeper—not into logistics, but into recognition.

A lack of curiosity is a quiet kind of erasure. Without asking, assumptions filled the space where questions should have lived. My body—mapped by fractures, threaded with titanium, carrying pain like a second skeleton—was reduced to numbers and appearances. And then, in the clinical notes, a sentence appeared that did not belong to me:

“Pt states 0 out of 10 pain.”

A sentence I never said. A reality not mine since my de novo diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017.

Let me pause here—because this matters: always always read the notes after every health care visit. Always. What is written becomes record, and what becomes record becomes truth in the eyes of a system that rarely looks twice.

Since 2017, I have corrected so many errors—ghost details, templated assumptions, fragments of other patients’ stories mistakenly assigned to my own. But this one struck differently.

Because pain is not incidental in my life. It is structural. It shapes my days, dictates my movements, taxes tomorrow for what I dare to do today. It is the reason I move carefully, plan obsessively, endure quietly. It is the reason I fight—again and again—to remain present without surrendering to medications that would take me further from my life than the pain itself.

To see it erased so casually—to be rendered as “0 out of 10”—felt like being written out of my own story.

Dismissed.
Flattened.
Unseen.

And yet—this is where accountability shifted, took on a different weight.

The nurse, kind and competent in person, called me. She told me no one had challenged her this way before. She told me it would change how she practices.

I want to believe her.

Because beneath all of this—beneath the data, the documentation, the machinery—there is a simple, aching human desire: to be seen. To be known. Even in a system not built for intimacy, that need persists, stubborn and unyielding. Her call did not erase the moment, but it acknowledged it. And that acknowledgment mattered more than the correction itself. It was a small restoration of something I hadn’t realized had been taken.

The third challenge was more familiar, almost expected: scheduling without consent. Appointments made, moved, rearranged—my time treated as elastic, infinitely adjustable, at the mercy of others who have no idea what shapes my days. It has happened at every center, despite policies that say otherwise. So I have adapted. I document everything. I collect proof like a safeguard against the slow creep of doubt that comes when reality is rewritten in systems you cannot control.

Here, too, I learned the rules—but only after they were applied to me. How much easier it would have been to be told from the beginning, to be treated as a participant rather than a variable. A person, not an inanimate object to be slotted into place.

As I look back on these three moments—the hours spent on calls, the messages sent, the emotional residue they left behind—I feel the weight of them all over again. Because they did not happen in isolation. They unfolded alongside treatment, alongside side effects, alongside the ongoing labor of living: my children, their schedules, their needs, the ordinary chaos of a life that does not pause for illness.

There is no convenient time for these disruptions.
But more than that—there is no reserve of energy waiting to absorb them.

And so accountability, in practice, becomes something else entirely.
Not a definition. Not a policy.

But a demand placed—again and again—on the person with the least capacity, the least energy, to carry it.

A kind of quicksand I enter reluctantly, knowing how much it will take to pull myself back out.