• CHRONIC PAIN
• ETHICS
• Public Health

Silent snow whispers,

Hope blooms amid pain’s shadows,

Forge to brighter days.

The first snowflakes of December 2022 fell like fragile whispers of hope, blanketing Minneapolis in a serene white. Inside the cozy confines of my home, the contrast could not have been starker. This day, like many others before it, was a painful struggle against an invisible enemy. Little did I know, this day would also mark a turning point in my long journey from a cancer survivor to a passionate advocate for my own health.

My name is Sarah and my battle first began back in 2012 when I was diagnosed with stage 3 breast cancer. The news hit like a sledgehammer, shattering the normalcy of life. My days were soon filled with relentless cycles of chemotherapy, radiation treatment, and surgery. Each round of treatment was a grueling experience, but I clung to hope, believing that remission would be my reward. And in 2016, when my oncologist finally declared me cancer-free, I thought I had come through victorious—“I beat CANCER!”

… But cancer left behind more than just battle scars. Over the next few months, a new, insidious adversary crept into my life—chemotherapy-induced peripheral neuropathy. The treatment that had once saved me, now tormented me. My legs and feet became battlegrounds of constant, intractable pain; a cruel reminder that my suffering was far from over.

The pain was like shards of glass embedded in my skin, each step a deeper cut. Instead of providing rest and reprieve, the nights were the worst. I would lie in bed, staring at the ceiling, tears streaming down my face as I tried to massage some semblance of relief into my legs. The darkness of the room seemed to magnify the intensity of my suffering, turning my bedroom into a prison of agony.

I sought help and fought tirelessly. Despite exploring an array of treatments—medications, physical therapy, scrambler therapy, acupuncture, topical creams, injections—none offered lasting relief. After exhausting the care available from local clinicians, I found myself on a long, winding road—literally and figuratively. The nearest pain specialty care was a 4-hour drive away, a journey that felt like an odyssey through snow-covered fields and endless highways. A glimmer of hope emerged after my pain specialist discussed the possible option of spinal cord stimulation. A bit of investigation found this to be an emerging therapy that may relieve nerve pain.

A brief glimpse of hope was soon dashed; my insurance company denied coverage, deeming it “medically unnecessary”—a cold, clinical term that overlooked the daily torment I endured. The denial felt like a betrayal, a heartless rejection. It was as if my pain, my struggles, and my very existence had been reduced to a series of codes and criteria that I did not meet. Each denial letter was devastating, and the appeals process became a labyrinthine nightmare.

I became a shadow of myself, unable to walk without agony, unable to sleep through the night, unable to live as I once did. Friends and family were supportive, but they could only do so much. I felt alone in my fight, burdened by a system that seemed to view me as a statistic rather than a person in need.

Cold voice on the line,

Pleading falls on deaf silence,

Hope fades with each word.

Every appeal and phone call to the insurance company was another step in an endless battle. My frustration grew as I found myself having to explain my pain over and over again, trying to convince them that my suffering was real. Each call felt like a repeat of the last—recounting my story, detailing my symptoms, only to be met with the same cold, indifferent response. In a moment of desperation, I faxed over my medical records, detailed diaries of my pain scores, and even letters from my doctors pleading my case. But the response was the same—a sterile form letter, unsigned, denying my appeal once again.

The financial burden was another layer of torment. After months of exhausting our savings on treatments and travel expenses, I found myself in the agonizing position of asking my family and friends for help. The desperation also pushed me to take a step I never imagined I would—seeking financial help from an online crowdfunding site. It felt like admitting defeat, like broadcasting my vulnerability to the world. When I finally hit “publish,” I felt both a flicker of hope and a deep sense of humiliation. I had always been the one to help others, to be strong, and now I was asking friends, acquaintances, and even strangers for donations just to afford medical care.

In one particularly low moment, I wrote letters to different people—the state representative, the CEO of the insurance company, the president of the treatment device company—hoping to bypass the bureaucracy. The response remained a deafening silence.

Hollowed by despair,

Silent pain fuels fierce resolve,

Voices rise, protest!

Desperation can ignite a fire within, and as the months dragged on, that fire became a burning resolve. By December 2022, I connected with other patients facing similar struggles through online support groups. Together, we organized a peaceful protest outside the headquarters of our insurance company in Minneapolis. Despite the bitter cold, we gathered with signs, chants, and a collective determination to be heard—to be seen as a human, not a code or data point.

The day of the protest was frigid and gray (figure 1). We huddled together, our breath visible in the icy air, as we shared our stories of pain. I took the loudspeaker in hand, my voice trembling but firm. “Patients over profits! No more denials!” I shouted, my words a plea to both the gathered crowd and the faceless entity that held our fate in its bureaucratic grip. The protest grew more grueling. Hours passed, the protest gaining momentum as news reporters took to interviewing some of us. Their cameras captured the desperation etched on our faces as we chanted and as our voices grew stronger.

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Figure 1

Figure was created with assistance of Canva artificial intelligence (Canva Magic Media). This image is not copyrighted and per Canva policy, this can be used for personal and commercial purposes.

Then, through the snowfall, a figure emerged from the building. A stranger in a business suit and sunglasses walked toward me, standing out starkly against the backdrop of the protest. He handed me a slip of paper and stated a few terse words—“Insurance claim number is here”—and then disappeared into the crowd as he handed additional slips to other protesters.

For a moment, I was stunned, not understanding. As the realization hit, I collapsed to my knees, tears streaming down my face. It was the breakthrough I had fought so hard for.

Relief blooms like spring,

Pain’s grip loosens, life reborn,

Hope blossoms anew.

My story is a call to arms for patients and healthcare providers to advocate relentlessly for necessary treatments and to push for systemic reforms that prioritize patient health over profit margins. The countless stories of patients denied access to critical treatments paint a grim picture of a system that too often values cost-cutting over compassion. The struggle for approval and the constant fight against denials should not be a requisite part of the healing process. The concern remains that healthcare has evolved into a battleground where patients must constantly advocate for themselves to access the care they need. This should not be the norm.

As I write this reflection years later, my battle did not end with the approval of my treatment. It ignited a new war for advocacy. I joined an advocacy group, fueled by a deep desire to challenge the system. As I delve deeper into the labyrinth of healthcare finance, the path to change is not as straightforward. My initial outrage at the system’s failures is tempered by a more complex understanding of the factors at play. The high cost and access to medical treatments is shaped by a web of factors. It is easy to say that costs should be lowered and access should be an undeniable right, but the reality is that it is a delicate balance—one that involves far more than just adjusting a price tag. Physicians and healthcare providers, too, walk a tightrope, trying to offer the best care while navigating the financial pressures of running a practice. They, like the patients they serve, are caught in a system that demands both compassion and pragmatism. And then there is the issue of emerging treatments—like the spinal cord stimulation that finally brought me relief. While it was a miracle for me, I came to understand that it is not a one-size-fits-all solution. The demand for more evidence, more research, and a track record of long-term benefit is crucial. Without it, we risk approving expensive interventions that might not work for everyone, leading to higher insurance rates and healthcare costs. In the end, my fight is not just about advocating for treatments, but about seeking a more just and balanced system—one that does not force patients to choose between their health and financial ruin, one that values evidence as much as empathy, and one that recognizes the intricate dance between cost and care.

The snow has long melted, but the memory of that pivotal December day remains vivid. It reminds me that while the road to recovery is fraught with obstacles, it is also lined with opportunities for profound change. Through advocacy, persistence, and a refusal to accept unjust denials, we can transform our pain into a force for good, ensuring that no patient has to fight alone in a system that should be designed to heal, not hinder.

Battles won today,

Future’s uncertainty looms,

Hope amid darkness.