The smoke settles in the holler, unable to escape the hemlock trees encasing the valley. The white clouds of spice and cedar lift into the sky, but fall shy of the canopy of green above, dipping below, lower and lower, settling like a dense fog. The hemlocks stir and rattle. With a drip, drip, drip, they remind all those around that this is, indeed, a rainforest. Not one that you read about in a storybook — grand and filled with Amazonian splendor, with waves of color and exotic intrigue. Here there are no capybaras, toucans, or jaguars. You’ll find no anacondas, poison dart frogs, or bullet ants. Instead there are black bears, wild turkeys, and spotted salamanders. And an ensemble of woodpeckers and owls, unconcerned with our measurements of time. Whippoorwills cry their own names, constant, ceaseless, singing under the moon. With a crackle of a fire, a single ember releases, finding its way above the trees. Off, gone, forever.

Beyond the holler lies a lake — modest, but loved. And a thickness in the air. A storm threatening to release its fury, a reminder of its power. One drop hits the lake, yet she hardly notices, standing proud and expansive, more than 1,000 acres. But as they are prone to do, that drop transforms into another, and then into hundreds and thousands, one drop indistinguishable from the next, rippling and quaking the water. Then, as quickly as it enters, it disappears, leaving blue skies and a freedom from this release of nature’s tension.

Beyond the hush of the holler, a town hums along. Paintsville, Kentucky lies in the foothills of the Appalachian Mountains in the Cumberland Plateau. The “City Between the Lakes” is made up of just over 4,000 residents and spans about five square miles of land. Most modern conveniences can be spotted in Paintsville — chain restaurants, grocery stores, schools, a library, a hospital, a detention center, even liquor stores, which made an appearance after Paintsville dropped its prohibition of alcohol sales in 2009. The downtown, removed from the big box offerings down the road, provides a sense of peaceful connection. On the way to Main Street, it’s hard to ignore the people on their porches. Sitting and sipping and swinging. Waiting for nothing, at least nothing in particular. And right by the courthouse, across the street from a diner, and a few paces away from a coffee shop sits a bench. A bench where you can watch the children line up in anticipation of the local theatre’s production of Beauty and the Beast. A bench shaded by an oak tree.

Paintsville is more than another small town. It is rich in its stories. Some whispered, some sung, some carried with the wind.

Less than ten miles from that bench lies Butcher Hollow, the childhood home of country music singer and songwriter Loretta Lynn. Touring the home requires a stop at Webb Grocery and an ambitious one-lane drive past an old yellow school house and the narrow opening to a coal mine in Van Lear, Kentucky. The two room cabin where she was raised still stands — adorned with quilts, guitars, and a coal burning stove. But Loretta isn’t the only country storyteller from this area. The US 23 country musicians, as they are known, dot Eastern Kentucky with a special focus in Paintsville at the US 23 Country Music Highway Museum. Each Thursday evening people of all ages join together in a joyful blend of line dancing, strumming, and jubilation. And while bluegrass is the flavor, the soul is more like church. A communion between neighbors. Between God and man. A tap of the shoe or the pick of a banjo begins to tell the tale and remind us that here, in this moment, we are all one. We are human, sharing in the same joys and sorrows, acknowledging that life is happening now all around us.

Music is more than simple sounds and lyrics strung together. It is a memory and an aspiration for the future. It is the stories we carry, the ones we can’t quite speak but can find in melody. Before stories were written, they were sung. Around fires, in yards, on front porches. The old ballads carried warnings and wishes, passing through generations like heirlooms. Even now, when words fail, music doesn’t, it can’t. It is a story we feel before we understand it, before we remember it, before we even know it. And long after we are gone, our stories will carry.

Nestled in the serene campground at Paintsville Lake there is no internet, no cell service. But there are stories. Stories that come through like whispers through the trees from another time. Stories from families gathered together around a campfire. Stories of unknown lights and lost travelers, of powerful coal barons still clinging to this world, of hellhounds and shadowy beasts. And stories of love, loss, and survival. Of appreciation of family and the holiness of breaking bread. Of honoring heritage and searching for meaning. The whippoorwill knows these stories and he tries to share them, constant, ceaseless, singing under the moon.

Paintsville is a place of stories. Forgotten by some, not gone. Quiet, not a ghost. A place where stories linger, waiting to be heard.

When leaving a town or city for another destination there is a joy for what is ahead, but a sadness for what is now behind. Every place changes. Time reshapes its purpose — sometimes for better, sometimes for worse, and at times simply to begin anew. On a future visit, it’s an entirely new place, not the place you knew before. The same can be said for us. We are reshaped similarly — not constantly tethered to the person we once were nor a mere temporal imprint of ourselves — but transformed by time.

This notion might appear melancholy, but it can be freeing. The goal of travel then doesn’t become finding a place to live or a vacation destination to return to year over year. The aspiration is to absorb a place in a particular time and to honor it while you exist in it. We’re thus called to embrace the moment, absolved of anticipating the potential it holds.

Upon first visit, the cafe in a Southwestern town presented such grandeur as we wound through the historic dining room to a courtyard in the back where a waterfall drowned out the sounds of traffic on the street and the birds whistled and hopped joyfully around our feet. The meal was beautiful, the experience, a delight — one we would dream of for years. With abounding excitement, we rushed into the same cafe a few years later. The same dining room had lost its luster, stuffy and musty, we sat inside, eating with urgency before heading for the door. Had the cafe declined, or was it us?

A mere month later we were sitting on a beach connected to a lake on the border of Utah and Arizona. In the center sat a rock, tall and proud — Lone Rock. Getting close to it required a boat and a fearlessness of the sun above. A spectacular site for those of us surrounded by desert. But in just a few short years Lone Rock was accessible by foot, a stout rock in the middle of more sand, touching the water only when the ice melts.

Expectations can taint a revisit, and thus moving onward, moving forward allows for new discoveries and a sacred memory of what was. Not unlike a place, the expectations of our old selves cause us to lose sight of who we are and who we could become.

This isn’t to forsake a place, that no one should revisit a spot that once brought them some joy, or peace, or happiness. But if you find yourself fortunate to revisit, love it for what it is, a new place in a new time.

As expressed by Thomas Wolf in his novel, You Can’t Go Home Again, the act of returning to a familiar place often reveals that neither the place nor the person remains unchanged. Home, or any place we hold dear, exists not just as a physical location but as a moment suspended in time, shaped by who we were and the context in which we experienced it.

People often ask, “What has been your favorite place that you have visited?” and as I smile and wonder, I know that I don’t have an answer. At least not a simple one. Sometimes my favorite place is when I am in motion, driving down the road and staring out at the community supporting their children as they play baseball on a Saturday morning. On occasion it is when I am sitting in the parking lot of a local museum, taking in the first warm day of a frightful frost. Or it can be when I have arrived in a city like Las Vegas, radiating with all of its kitschy, sparkling brilliance. Often it is in the stillness of the mountains as the fog lifts.

There are new places around every turn and new chances in places from before. It is true that you can’t go home again expecting home to be as you left it, but you can go home again knowing that both you and the place are reborn and that there is more around each corner.

The sun beamed in through the windows adorned with frills, signaling the late morning of a crisp winter day, lemons dancing across the fabric, rumpled and pushed aside to let in the solar delight. The sunlight radiated across my back, causing me to arch and twist to gain better access to the source of heat. As I sat at the counter, wobbling in defiance against the weight of my body, I looked into the kitchen before me.

Steam rose from the stove, causing droplets to form on the vent above and fall back into the black-and-white speckled pot bubbling and boiling below. The smells filled my nose, scents that I had grown accustomed to: tomato, garlic, onion, hominy, cumin. Some unfamiliar scents sneaked their way in. Venison, perhaps? I felt my stomach rumble, filing its complaint.

The counter jostled as I leaned on its surface. The corners were mismatched; two rounded and two squared. The work of an amateur craftsman doing a favor for a friend. I ran my hands across both corners, wondering how long it had taken for anyone to notice this flaw. And admittedly, wondering if it really mattered.

I lifted my head, and there she was — a grandmother, a mother. Badges she wore. Her eyes held a quiet wisdom and her lips curved in a faint smile that spoke of both joy and weariness. She hummed a song under her breath, something like “You Are My Sunshine” that faded into John Lennon’s “Imagine” before looping back again. She reached for a mason jar, something thick and crimson inside, no doubt a substance she’d canned during the breezy summer months when winter was a mere folk tale for the future. But here we were, tucked inside, waiting out the frigid world beyond these walls.

The counter where I sat was its own oasis, a sight unseen, but right in the middle of it all. I could exist here quietly. Watching.

She reached behind, rubbing the small of her back, and her eyebrows furrowed. I took her in. Her hair, short and permed, seemed to sit perfectly atop her head. The thick glasses rested heavily on her nose, sliding ever so slightly. Her face sagged gently, lines adorning her cheeks. My eyes settled on her hands, her skin wrinkled not from the moisture of brewing her concoction, but from life. I looked down at my own hands, untouched by age — slender fingers, taut skin, not a sag or ripple in sight. Feeling uncertain about what time would do to me, I folded my hands and placed them in my lap.

The stamping of heavy feet rattled the temperamental counter.

He marched inside, burly like a lumberjack, making himself known with a boisterous, “I’m back!” He left the imprint of his shoes in snow on the tile as he moved into the kitchen. She didn’t lift her head, but her body loosened; her shoulders dropped. He kissed her head, and she looked up, rolling her eyes. Next, a kiss on her cheek, the corners of her lips turning upward. A kiss on the other cheek, and she smiled and lifted her face toward him. She giggled and pushed her hand against his chest, adorned with a thick red-and-green flannel to weather the storm outside. He adjusted his galluses playfully, and she shook her head, turning her attention back to the bubbling pot.

My heart stumbled as I watched her — a woman, radiant and soft. The ease with which she responded to his touch, the flirtatious tilt of her chin, the warmth of her laughter; these were new to my eyes.

The sun shifted, sliding further across the floor and into the crevices of the kitchen. Her eyes met mine across the space between us. Her smile was pure and filled with love. She gave the pot one final stir, wiped her hands on her apron, and turned to him with the same smile. A grandmother, a mother. A wife, a woman.

I wrote this short piece a little over a year ago while preparing for our latest move to New England, just shy of 1,000 miles from where I grew up in Appalachia and even farther from our then-home in Tennessee.

Inspired by Alice Walker’s Everyday Use, I was challenged to consider what it means to leave the place where you were raised and what it means to stay. Over this last year, I’ve learned deeply what it is to care for and what home really is.

“I will wait for her in the yard that Maggie and I made so clean and wavy yesterday afternoon. A yard like this is more comfortable than most people know. It is not just a yard. It is like an extended living room. When the hard clay is swept clean as a floor and the fine sand around the edges lined with tiny, irregular grooves, anyone can come and sit and look up into the elm tree and wait for the breezes that never come inside the house.”

Everyday Use, Alice Walker

We pulled into the driveway, its surface cracked and crumbling, a relic of asphalt laid decades ago. Weeds pushed through the fissures, stubborn and unwelcome. To my right, the house came into view — a modest one-level structure with white paneling across the front, brick to the side marking an old expansion, and a wraparound deck in the back opening up to the forest. Likely built by a friend or family member. But what was the difference?

An old maple tree stood before it, partially obscuring my view. It couldn’t be mistaken for humble. Grand and majestic, its branches stretched wide, heavy with green leaves and thick with sap. Sap that oozed and sealed wounds. In autumn, the leaves would blaze a bright golden and drop to the tough ground below, only to return in spring, verdant and flourishing. As a child, I was proud of that tree. I would invite classmates over, eager to show them its towering presence. We would stomp and gallop beneath it, tossing leaves into the air or climbing its branches.

A squeeze of my hand pulled me back. I turned to my partner in the driver’s seat.

“Are you okay?” he asked, his voice deep and steady. But we both knew the truth. I was caught between deeply ready and wildly unprepared for what lay ahead.

I had left home over fifteen years ago, urged by everyone around me.

“You’ve gotta leave,” my mother said with quiet certainty.

“There’s nothing for you here,” my father declared with both frustration and bitterness.

Even my grandmother encouraged me to go, to find myself. And so I did. I owed it to them. I owed it to myself. I prayed about it. I whispered it like a hymn before bed. When I left, it was only an hour away, but it felt like a world apart. Something new, something wholly my own.

Years later, with another free spirit beside me, I found a new home. Where mourning doves cried and herons swooped. Where the water met the mountains, and freedom stretched wide. I returned again, only to tell them I was leaving; this time farther, this time for good.

My mother left the room sobbing.

She didn’t know then that I would have my own home, my own tree. I would tell them about it. How its leaves turn a vibrant amber before falling all at once at the season’s first whisper of frost.

Many years passed. The family grew smaller. Gatherings became fewer.

On one of my visits, as I was preparing to leave, my grandmother took my hand; her skin warm, wrinkled, familiar.

“Will you come back sometime?” she asked.

It was a simple question. Not hard, not really. But it felt insurmountable.

A “Yes, of course” caught in my throat. I couldn’t muster it, so I just nodded.

I wept when I left. For me, for her, for all of us.

And now, here I was again, staring at the house from the car. My fingers tightened around his, my knuckles white with uncertainty. I took a deep breath but didn’t release it, unsure if I might need the oxygen for later.

Then, my eyes found the maple tree. The one thing in this place that had never stopped growing. It had grown with my family. It had grown with me. Its sap still flowed. Its leaves still turned and fell, only to return each spring. Renewed, resilient, and full of life.

I perched on the bedside, upright and stiff, chilled by the artificial air blowing aggressively against my face. The mattress beneath me was uneven, its lumps leaving me unsettled as I sat at its edge and scanned the hospital room. The paint was chipping in the corners, and the only adornments were medical equipment and a television set, old and bulbous, meant to serve as a distraction from the dismal milieu. But who could watch TV at a time like this?

Beyond the room, the chaos of the hospital pressed in—beeping monitors, hurried footsteps, distant voices laced with urgency, grief, and exhaustion. Then, cutting through it all, came his familiar rattling cough, pulling me back.

I turned to my grandfather, lying in the hospital bed, and forced a smile—the kind you wear like an ill-fitting dress to a dinner party. Tight. Uncomfortable. Nothing I wanted to wear. I edged closer and took his hands, bruised from countless needle pricks, rough and cracked from a long, hard life. The same hands I used to help him wash when I was a child, scrubbing away the dirt and grime after a long day of hauling gravel or working high up in the mountains.

He’d rush into the house, and I would be there, waiting, leading him to the sink as my grandmother called from the kitchen, “Hey you two! Wash up for dinner!” I’d flick the faucet on, grab the familiar green knob of Irish Spring, and together we’d scrub—watching as the dirt swirled down the drain, leaving streaks on the porcelain, showing its trail.

Another cough. Another rattle. I was back in the hospital room.

Now he was smiling, regaling me with stories of his childhood—of playing with an old rusty bucket alongside his brother, the brother he lost long ago to mental illness. Stories I’d never heard before, small and seemingly inconsequential, yet weighted with meaning. His voice was gruff, the same voice that once greeted me on the phone, calling out to my grandmother, “It’s the baby,” before clinging to the receiver, reluctant to pass me along. My grandmother left huffing in the background. 

More coughing, this time followed by a sigh. He motioned for me to lean in, then gestured toward my husband. Over the years, the two of them had become quiet confidants—silent, strong presences at family gatherings, bound by unspoken understandings. The three of us huddled together on the tiny, wobbly bed. He knew that soon it would be time for us to leave, to walk down the bright white hallways and pass by the cafeteria with its overwhelmingly bland smells on the way out the door. He knew. But he didn’t hold on tight, gripping to what was. He held onto my hand gently, the warmth of his grasp radiating.

His eyes, still sharp with conviction, met mine.

And then, in that moment, he shared his parting words to us—ones that would sear themselves into my memory. A tattoo on my brain. A permanent imprint. He was a true philosopher.

Growing up, I was told stories. Tales of disappearing tomatoes and bucking horses, legends like the Mothman and haunted amusement parks, and folk stories of John Henry and Johnny Appleseed. The stories drew me deeper and deeper into those worlds, I could imagine myself tasting those sweet, summer tomatoes, seeing the red eyes of the Mothman in the dark of night, and lifting my arms high into the air to swing my hammer.

As I grew older, I started reading stories that helped me make sense of the world — fantastical fables with children on adventures, then coming-of-age novels with young women navigating school and love, next biographies and other true stories of life and loss. I might just be one girl in a house in the middle of the Appalachians, but these stories showed me all that I could be and all that this world, and other imagined ones, could offer.

When I was diagnosed with Rheumatoid Arthritis, the books that I had leaned on stopped providing the joy and understanding they once had. They simply did not reflect my reality. I would spend the next many years looking for stories that represented my experience — an experience of pain, but of resilience and strength. And while I still read, both to learn and entertain, it felt as though something was missing.

Storytelling is a human tradition. It predates written word and we can see indications of storytelling in cave drawings. We tell stories to communicate and connect, to educate and entertain. But we also tell stories to preserve and share our culture, and to make sense of our lived experiences. Storytelling is as much a tool for the listener or reader as it is for the storyteller herself.

During spring 2020, I shared my journey with Rheumatoid Arthritis. When I wrote my first draft of this story, I wrote it for myself. It contained immensely personal details, some of them dull and mundane, others much more visceral. I never intended to publish it. But as the days and pains of the COVID-19 pandemic went on, I felt pulled to finally make my story public. A story that I had kept tucked close to my heart and held onto with all the grip that I could muster. In the days that followed, I heard from others with RA, and then others with chronic conditions, and then caregivers. By simply sharing my imperfect account, others who were in pain and dismissed, no longer felt ignored or alone. Caregivers expressed a better understanding of their loved ones' challenges with their conditions, a new lens on this person for whom they care.

Telling stories surrounding health and healthcare is a necessary piece of understanding what health means, who patients are, what healthcare experiences truly look like, and how we can improve health and healthcare more broadly.

Medical anthropology began to take hold in the 1960s examining how different societies understand and respond to health and disease, including the social determinants of health. The results of this understanding are often told as stories. In recent years, we've seen an emergence of narrative medicine, a medical approach that utilizes patients' narratives to enhance the care provided by healthcare professionals. It emphasizes the importance of understanding patients' experiences and perspectives to improve diagnosis, treatment, and overall care. Storytelling in healthcare is deserving of attention.

It has long been understood that stories increase empathy and can make strides in how we view those different from ourselves. This isn't a novel notion. But storytelling changes how the body works. Researcher Paul J. Zak discovered behavioral effects of the neurochemical, oxytocin, uncovering that narratives can cause a release of oxytocin which in turn impacts our values, attitudes, beliefs, and behaviors. This release is associated with increases in empathy and narrative transportation.

Additionally, using fMRI to record brain activity from speakers and listeners during natural communication, researchers found that the speaker's brain activity is closely coupled with the listener's, both spatially and temporally. This synchronicity of mind and body speaks to the great potential storytelling has.

When I think back to myself, staring at a screen, and writing out my story, I never could have imagined the impact it would have on me. It gave me the confidence to share openly, to use writing to digest my own emotions, and to begin advocating for others.

The act of sharing our narratives is therapeutic in and of itself, but the impact of hearing from others in similar situations is striking. Sharing personal stories can provide hope to others in similar situations by fostering resilience, promoting personal connection, and creating narratives of agency. I aim to use my life experiences and understanding of our complex healthcare systems to serve those with chronic conditions whose voices often go ignored. And stories have the power to make that a reality.

“​​The connotation of going beyond the science into the person is all I'm asking —that there be a sign of willingness, more than a kind of Pascal-like dialogue, which is too much to ask. It could be done almost in pantomime. There is the way a doctor looks at you. One doctor I saw had a trick way of almost crossing his eyes, so he seemed to be peering warmly, humanistically, into my eyes, but he wasn't seeing me at all. He was looking without looking. I never felt that I contacted him.” p. 49, The Patient Examines the Doctor, Anatole Broyard. 

The doctor took my hands, knotted from arthritis, looked into my eyes, and spoke to me with commitment. She told me that we would work together to restore my health. She didn’t grandstand, promising a life and a body that was uncertain, she committed that she would do her best. With earnestness in her own eyes, I knew that I could trust her. For the first time in many months, I had hope. 

Just days prior I couldn’t lift myself from a seated position without excruciating pain coursing through my legs and stabbing my knees. I didn’t attempt to stand for more than a few minutes and walking any further than the mailbox was entirely infeasible. I couldn’t lift my arms to dress myself or brush my hair. After being granted that glimmer of hope sitting on an exam table, I could button a shirt, stand while visiting a museum, and walk blocks around the neighborhood. All this before making any changes to medication or lifestyle, though this was to come. 

In his piece, The Patient Examines the Doctor, Anatole Broyard was looking for a physician “intense enough or willful enough to prevail over something powerful and demonic like illness.” His desire was for a doctor who had a certain “magic” about them, one who could protect him against the “soul loss” that comes with illness, when you feel as though your body has left you to rot and all that is left is, in fact, your soul. While not stated directly, what Broyard was looking for was hope.

Hope in healthcare can feel nearly magical. Hope is consistently linked to a better quality of life in individuals with chronic conditions. With greater optimism and hope, individuals are more likely to engage in healthy behaviors, which can contribute to positive outcomes. This is a phenomenon that has been studied for decades. 

Late psychologist, Charles R. Snyder wrote extensively about hope throughout the 1990s and early 2000s. His studies began in the 1980s, as he was formulating what became his Hope Theory. In this, Snyder defines hope as “the perceived capability to derive pathways to desired goals, and motivate oneself via agency thinking to use those pathways.” Put simply, it is about believing you can determine how to reach your goals (pathways thinking) and being motivated to follow through on those plans (agency thinking). This concept is central to Hope Theory, where having both a sense of direction (pathways) and willpower (agency) is crucial for achieving success and overcoming obstacles.

Given this, hope is a moral imperative, fulfilled, at least in part, by the relationship between patient and physician. It cannot be manifested by sheer will, it comes from the relationship with the doctor, the one who is willing to look into your eyes and to see the “soul” within, as Broyard might say. When the doctor took my hands, she saw me. The sense of hope that I felt came not from her kindness or expertise, but from her connection to me. When she said that we would work together, I felt a sense of commitment to our relationship that I did not have before. With all of her magic and mine blending together in a symphony of not just commiseration and condolences, but care and compassion — I now had a partner on this journey.

Meet Robert

In the United States, six in every ten adults have a chronic condition. These conditions are often debilitating and lead to individual and society-wide economic impacts. The management of chronic conditions can impose a notable financial strain on individuals and their families. The challenges of handling these conditions often force individuals to make difficult decisions between healthcare and essential living costs, potentially jeopardizing their overall health outcomes. This issue is heightened by the escalating costs of healthcare and loss of employment. As a populous, we’re called to ask ourselves a few questions — Who is facing this increased economic burden? Why is this particularly problematic? What are the society-wide consequences? What is our responsibility to individuals with this increased economic burden? And what can be done to improve the situation?

Let’s begin by taking a look at Robert. When he was 25, he was diagnosed with Multiple Sclerosis (MS), a chronic and often disabling neurological disorder that affects the central nervous system, including the brain and spinal cord. Robert worked as a mining electrician before his diagnosis and continued with his employment for five years following. However, his experience with MS caused great pain and confusion, particularly in the first few years as he was beginning to manage his disease with medication. Eventually, he was no longer able to work through his pain and left his job. This resulted in a loss of household income of nearly 50 percent. Robert is a husband and father, and while his wife, June, was also part of the workforce, the loss of income and added medical expenses weighed heavy on the family. Not long after leaving his job, Robert filed for disability benefits. However, this was a long, arduous process that left Robert, his wife, and his daughter struggling financially, making each purchase of clothing, food, and gas an increased burden on the family.

Who is facing this increased economic burden?

Robert’s story is not unique. Individuals and their families experience a substantial financial load related to the management of chronic conditions. Adults with chronic conditions are more than twice as likely as their counterparts to face problems with paying medical bills. This challenge is even more significant among individuals in low-income households. Almost half — 47 percent — of low-income adults with chronic conditions report issues with paying medical bills. Households with an individual with a chronic condition had higher odds of increased out-of-pocket costs and medical debt, resulting in a larger financial burden.

On average, individuals with chronic conditions face annual direct healthcare costs — including inpatient and outpatient care, laboratory work, x-rays, medications, procedures, and other expenses related directly to medical care — amounting to $6,032, which is five times higher than the expenses incurred by individuals without such health conditions. However, indirect costs also add up for individuals and families, one that is more difficult to measure. These indirect costs include transportation to and from appointments, caretaker services, assistive devices, supplemental items such as ice packs to aid in healing, and a number of other expenses.

Moreover, caretakers who are often family members, cope with additional financial impacts. When managing the care of a loved one with a chronic condition, family caretakers often leave their jobs and the workforce entirely, compounding the financial loss for households. June left her job of ten years to care for Robert, significantly reducing their household income. While June eventually returned to the workforce, she often had to change positions and employers to meet the needs of her family, which included reduced hours and lower-paying jobs. After 15 years of navigating the healthcare system with a chronic condition and the mounting costs, Robert and June filed for bankruptcy.

Why is this economic burden particularly problematic?

Navigating the challenges of managing these conditions can force individuals into tough choices between prioritizing healthcare and covering fundamental living expenses. These trade-offs often result in worse overall outcomes.

For adults below the federal poverty level, almost 14 percent do not take medications as prescribed by their doctors to save money. Not taking needed medications can lead to serious complications including flares that cause permanent damage, including acute events like heart attack and stroke. This degraded health can lead to high-cost interventions such as hospitalizations. Those with chronic conditions are not solely putting off medical treatment for their diseases, a poll of all Americans showed that 38 percent of adults put off treatment, a high for the country.

These difficulties are further exacerbated by rising consumer costs, particularly in healthcare. While consumer prices have grown overall, medical care prices have grown at an even faster rate since 2000. Additionally, the maximum out-of-pocket limit under the Affordable Care Act (ACA) is increasing at a faster rate than wages and salaries, emphasizing that this inflation is not limited to those with chronic conditions. Moreover, 39 percent of Americans report that they cut back on necessities like food, heat, and rent to pay medical bills. These trade-offs go beyond a simple choice but impose an existential decision for oneself and their family. Should I eat dinner or take my medication? Should I pay rent this month or have a necessary procedure? Should I buy new shoes for my child or take her to the doctor?

What are the society-wide consequences?

The financial burden of chronic conditions is made worse by one’s decreased ability to continuously and consistently earn income. Not only do individuals like Robert cope with the increased financial load from a loss of employment, but there are societal ramifications to the loss of a working-age adult in the country’s workforce. Often chronic conditions decrease one’s ability to maintain employment and among US working-age adults, having multiple chronic conditions reduced employment probability by 11 to 29 percent. Multiple chronic conditions often increased the number of days missed at work by 3 to 9 days each year.

In the US in 2022, the unemployment rate for persons with a disability was about twice as high as the rate for persons without a disability. For those who can continue working, they face striking physical and psychosocial limitations. As Robert’s condition progressed, he dealt with a number of symptoms including numbness and tingly, a lack of coordination, and blurred vision which impacted his capacity to complete the intricate work of an electrician. He initially pulled on the time he worked, but as an hourly worker, this was financially devastating, exacerbating his symptoms even further.

When we consider the fact that many individuals with chronic conditions are unable to work, we begin to see an impact on the overall economy. Good health and employment are components necessary to contribute to the economy with low unemployment and high productivity as indicators of a healthy and growing financial state. Economist Arthur Okun proposed that there is a relationship between unemployment and decreased production in a country. For every 1 percent decrease in unemployment, there is an associated two percent increase in GDP. Another economist, Frederick Mills argued that productivity is the most crucial factor in promoting economic growth, leading to higher wages and profits. Ultimately, unemployment leads to less spending power, a key component of a thriving economy. When looking at lost productivity, the cost of chronic disease in the United States is $3.7 trillion every year, about 19.6 percent of GDP. As evidenced, the economic impacts of chronic conditions go beyond the often catastrophic results for individuals and families, impacting the country as a whole.

What is our responsibility to individuals with this increased economic burden?

Some might question —  do we owe anything to individuals with chronic conditions? Shouldn’t we simply maintain our own health and leave others to do the same? Should we really sacrifice anything, no matter how small, for a stranger? With this notion, we are ignoring the value of human life.

For guidance, we look to Immanuel Kant’s Categorical Imperative, in which he asserts that all human beings have dignity that commands our respect. Humans are rational beings, capable of reason; and autonomous beings, capable of choosing freely. To honor the dignity of humanity and its capacity for reason and choice, we must treat others as ends in themselves. Leaving individuals with chronic conditions in a position where they must decide between food and medication, where they file for bankruptcy to avoid a suffocating pile of medical debt, and where they must leave the workforce due to a lack of accommodations is not honoring the dignity of the person.

Humans have unconditional value, value that is not determined by our utility. Kant states, “everything either has a price or dignity,” asserting that humans cannot have a price. However, in our existing healthcare system, we continue to put a price on the person as the factors of health and economics are deeply intertwined. Quality-adjusted life years (QALYs) are used extensively to determine who receives often life-saving interventions from organ transplants to critical surgeries. The QALY serves as an economic metric to assess the significance of health outcomes for individuals. It combines two distinct advantages of treatment, life duration, and life quality, into one final number. This continuously favors those deemed healthy and leaves those with chronic conditions at a disadvantage.

QALYS aren’t the only measure of value we apply to a person. Certain chronic conditions may require specialized treatments, medications, or care that may not be fully covered by insurance plans. The limitations of coverage for specific therapies or specialists could hinder individuals with chronic conditions from receiving the comprehensive care they need, affecting their overall well-being and dignity.

We live within a society, we exist within it, we benefit from it, and we must contribute back to it, including its people. Political Philosopher, Michael Sandel argues that we must enact policies that appeal to the common good and sense of solidarity within a community, that this is true justice. “If a just society requires a strong sense of community, it must find a way to cultivate in citizens a concern for the whole, a dedication to the common good.” Sandel contends that the common good matters because it provides a framework for ethical and political discussions that go beyond individual interests.

Sandel also speaks out about meritocracy and its corrosive nature toward the common good. He highlights a flaw about meritocracy, it divides people into groups — winners and losers. The winners believe that they deserve everything that they have due to their merit, while the losers believe that they deserve the little that they get. The winners forget about the elements of luck and fortune that helped with their success. The same can be extended to health. While we have some control over our health, there are elements that we simply cannot control. A diagnosis of a chronic condition can very well be considered one of the elements we cannot control.

What are some proposed solutions to improve the economic burden?

Supporting those with chronic conditions is beneficial to society, but beyond that, it is a matter of respecting humanity. One initial solution is to ensure that medications are affordable enough that patients with chronic conditions do not need to miss doses of medication to save money. People with chronic conditions often deal with medical debt while large pharmaceutical companies make billions, spending more on stock buybacks than on research and development. The prescription drug law through the Inflation Reduction Act signed in 2022 allows Medicare to negotiate with pharmaceutical companies directly. The law is meant to cap out-of-pocket prescription costs to approximately $3,500 per year. Most notably, it set the maximum cost of insulin at $35 per month for those with Medicare coverage. While these strides are needed for those on Medicare, extending these benefits to those on Medicaid would impact up to an additional 80 million individuals.

Another goal is to keep individuals with chronic conditions, who wish to work, in the workforce. This begins with the supervisor — fostering respect and keeping communication open can help people with chronic conditions comfortable within the workplace. However, though this relationship is important, so is the relationship between coworkers. Many individuals prefer to operate in a give-and-take capacity, picking up slack when another needs support.

In addition to these relational pieces, accommodations in the workplace are critical. The Americans with Disabilities Act (ADA) requires reasonable accommodations including physical changes, accessible and assistive technologies, accessible communications, and policy enhancements. Beyond these accommodations, offering flexible work arrangements allows for more autonomy to work in the way that is best for the individual. These are simple options but include remote work, compressed work weeks, flexible timing on schedule, part-time work, and job sharing — where two people do the job intended for one person. These flexible arrangements offer an opportunity to keep workers with chronic conditions healthier, more comfortable, and engaged with their work.

Finally, we need to adopt a more comprehensive approach to healthcare coverage. As of 2023, 40 states and the District of Columbia have adopted Medicaid expansion under the Affordable Care Act (ACA), which expands Medicaid coverage to adults with incomes up to 138% of the Federal Poverty Level. For people with chronic conditions, Medicaid expansion has decreased cost barriers for medical care, increased the frequency of wellness visits, and reduced the number of days of reported poor health. While the ACA does extend coverage to formerly uninsured individuals, it does not achieve universal healthcare. Although it significantly reduced the number of uninsured individuals, millions remain without coverage, particularly in states that have not expanded Medicaid.

Despite subsidies provided by the ACA, some individuals and families still find health insurance premiums and out-of-pocket costs to be unaffordable. Additionally, the ACA does not include a public option — a government-run health insurance plan, which could result in lower premiums. During the initial five years of ACA implementation, there was a notable enhancement in coverage for individuals with chronic diseases. The extension of Medicaid under the ACA played a crucial role in expanding coverage even further. However, after the American Health Care Act (AHCA) in 2017, coverage gains decreased.

To truly support health, we need a comprehensive system that closes coverage gaps and addresses both affordability and access.

Summing it up

In conclusion, the financial burden of chronic conditions casts a shadow over the lives of individuals and families. As exemplified by Robert’s story, the intersection of healthcare costs, loss of employment, and indirect expenses contributes to a profound strain on those grappling with chronic conditions. The repercussions extend beyond personal struggles to societal consequences, affecting employment rates, productivity, and the overall economic well-being of the nation. The ethical imperative to address this issue is underscored by considerations of human dignity, justice, and the common good. Striking a balance between economic viability and compassionate support for individuals with chronic conditions requires a multifaceted approach, including workplace accommodations, affordable medications, comprehensive healthcare coverage, and a collective commitment to fostering a society that values the well-being of all its members. Only through such concerted efforts can we hope to alleviate the financial burdens and promote economic justice in healthcare, ensuring a more equitable and compassionate future for those navigating the challenges of chronic conditions.

Meet Anna

In the United States, people with chronic conditions make up more than half of the adult population. These conditions, including diabetes, respiratory conditions, and arthritis, are marked by their length of effect — a year or more — and necessitate ongoing care and maintenance. People with chronic conditions are tasked with managing their diseases while accepting the additional time burden of said management. Individuals tending to chronic conditions dedicate a considerable portion of their time to health-related pursuits. Some allocate up to two hours daily to activities associated with personal healthcare, non-clinical health endeavors, and interactions with health services and systems. This time investment can pose a significant burden, especially for those contending with multiple chronic conditions. With this knowledge, some questions prevail — Why is the time burden so significant? How does time manifest as a bodily right? What is our responsibility to support the right to time of individuals with chronic conditions? And what can be done to improve these time demands?

Let’s look at Anna, she’s a 34-year-old woman who was diagnosed with Rheumatoid Arthritis at the age of 16. With the exception of periodic flares, Anna has managed her health without issue for the last 18 years. Anna goes about her day, from the outside, fairly unremarkably. She takes a shower, works from her home office, eats dinner with her partner, and reads before bed with her two cats on her lap. What we don’t see are the moments that Anna sneaks in between these activities. We miss the time and attention spent taking medications each morning, the hour-long break in the afternoon to heal while treating her joints with a heating pad, the search through documentation from her insurance company to see if a medication will be covered, the subsequent call to her doctor to obtain a prescription, and the following call to her pharmacy to see when the medication will be ready for pick up. This is another day for Anna. Tomorrow she knows that she will administer her weekly injection and she will need to do some light exercise. The next day might give her a break, she can forget that she has Rheumatoid Arthritis and visit with friends. But the following day her medication will arrive so she will need to be home to accept it and refrigerate it immediately. She will need to pause a call with a client to receive the package. Anna, who has her disease within her control, must still accept the daily obligation of managing her condition to keep it that way.

Why is the time burden of managing a chronic condition so significant?

Anna has been tossed into a system where she must sit on the phone for hours negotiating between a doctor’s office that is overburdened, a pharmacy that is understaffed, and an insurance company built for a market economy where patients are customers. These are the systems that drain most of Anna’s time.

To begin addressing this issue, we have to understand other underlying problems within our healthcare systems. The United States is facing a shortage of primary care physicians. The Association of American Medical Colleges predicts a shortage of 37,800 to 124,000 physicians by 2034. With this dearth of practicing physicians, looming concerns including diminished access to healthcare and a potential for increased morbidity and mortality permeate. Access to care becomes even more challenging when an individual is unable to find a primary care physician who often provides a coveted referral to a specialist.

In addition to physician shortages, there is an ongoing pharmacy crisis that came to a head with a series of walkouts from major pharmaceutical chains. Pharmacists express that they are experiencing a persistent state of being both overworked and understaffed, a situation that has persisted for an extended period. This all happened at a time when Rite Aid filed for bankruptcy and nationwide chains like Walgreens and CVS closed thousands of stores. These closures are contributing to ‘pharmacy deserts’ wherein patients have no access to a pharmacy within a reasonable distance from their home. This lack of access to pharmacies has been shown to lead to nonadherence to prescription medications. While online pharmacies can fill these gaps, they offer little in terms of a relationship that many individuals with chronic conditions value.

These scarcities are compounded by private health insurance companies that view patients with chronic conditions as solely customers of their services. While healthcare providers are expected to work within a code of ethics, insurance providers have no such guiding principles, beholden to profit. The health insurance industry continues to fail those with chronic conditions and resulting pain.

We see this misalignment often with individuals navigating chronic conditions within our healthcare system. After meeting with her rheumatologist, Anna switched to a new medication, one that would better modulate the immune response and reduce inflammation in the joints, greatly diminishing her pain. This medication was selected after Anna and her rheumatologist reviewed her family history and former treatment plans, and both assessed her lifestyle and goals. This choice was made over several weeks with great intention and research. However, Anna’s insurance company would not cover this medication and suggested one that could cause severe side effects due to her immediate family history. Anna remained untreated for several months during which her overall quality of life regraded before finding a way to finance this treatment.

Is time a unique bodily right?

In modern liberal theory, the defense of time as a bodily right is grounded in the foundational principles of individual autonomy, freedom, and the pursuit of well-being. Liberalism asserts that individuals possess inherent rights to make choices about their own lives, and this includes the right to determine how they allocate their time. People with chronic conditions are experts of their own bodies and ultimately, their time. To support this notion, we turn to the Father of Liberalism, John Locke. Locke coined the concept of self-ownership, stating that one’s body is his property. As an extension of this theory, you should be able to do what you choose with your property, including your body and your time, given you do not infringe upon the rights of others. Consequently, a system that does infringe upon the rights of others is one that must be assessed and adjusted.

Some might argue that while time impacts various aspects of life, it is not necessarily a part of one’s own body, and therefore, time is not a bodily right. However, one way to explore the intersection of bodily rights and time could be in the context of temporal autonomy or the right to control one’s own time without interference from outside entities like the government and health insurance companies. This separates time as a bodily right but introduces it as its own right worth protecting.

Time is indeed a bodily right from the perspective of phenomenology. One notable exploration of this idea can be found in the work of Maurice Merleau-Ponty who argued that the body and the perception of time are deeply intertwined, forming a lived experience that is inseparable from one’s bodily existence. According to Merleau-Ponty, our perception of time is not a detached, abstract concept but is grounded in the way we experience our bodies in the world. The body, therefore, serves as an extension through which time is not only measured but also felt and experienced.

Not only do patients with chronic conditions own their bodies, but they also own their diseases. This means patients can choose to respond to their diseases in the way that they see fit. Anna manages her condition, but she has limited control over how to spend her time if she wishes to maintain a desired level of health. This is a clear violation of her bodily right of time.

What is our responsibility to support the right to time of individuals with chronic conditions?

Six in ten people in the United States live with at least one chronic condition. With such a significant proportion of the country’s populous impacted, what is our responsibility to support these individuals? This goes beyond political and economic implications, there is a moral imperative to help protect the time of those with chronic conditions.

From here, we look to Liberal thinker John Rawls and his theory of justice as fairness, which lays out fundamental rights and liberties in an egalitarian system. Rawls’ difference principle states that social inequalities are acceptable if and only if they work to the benefit of the least advantaged members of society. This principle aligns with the concept of human rights, which seeks to protect and promote the well-being and dignity of all individuals, especially those who are marginalized and vulnerable, which often includes people with chronic conditions who face greater challenges in managing time within a complex healthcare system. To follow the guiding principles of justice and establish equality, we call upon distributive justice to allocate resources to those least-advantaged members of society, in this case, individuals with chronic conditions. We’ll discuss this more when we talk about solutions.

In our modern legal system, we have a maxim, “Justice delayed is justice denied.” This principle states that if the administration of justice is slowed considerably, then justice is essentially denied. This notion emphasizes the importance of timely and prompt resolution of legal matters. This can be similarly applied to the swift administration of healthcare services to individuals in need of them. This, however, should not be limited to access to a physician, but the expeditious delivery of other services such as administration of healthcare coverage, procurement of prescriptions, and entry to other health interventions.

Anna and many others with chronic conditions navigate complex healthcare systems, trading off quality, access, and financing. When finding a specialist, Anna waited six months for a diagnosis, when moving to a new city, she waited four months for a new specialist. Her insurance claims have been denied, causing an additional pause on treatment. Health justice is a vital part of overall justice, so much so that we can assert — that healthcare delayed is healthcare denied. Ethically, we have an obligation to help the rights of people with chronic conditions within our society, time included.

What can be done to improve time demands?

First, we can remove barriers to increase autonomy. People with chronic conditions should have more access to healthcare interventions without requiring prescriptions for some medications, bloodwork, and other procedures from physicians. This idea should be studied in more detail to determine what medications and testing would be beneficial without interfering with the common good, but there is potential to open up opportunities for patients who are already managing their conditions. If patients choose not to self-prescribe medication or testing, they can still decide to rely on physicians and seek medical guidance. This solution isn’t meant to replace physicians, but to offer an alternative option for individuals who need to make quick, yet educated decisions for their bodies. This could increase efficiency, improve autonomy, and benefit overall health.

Next, we need to strive to increase healthcare system efficiencies overall. We exist in a time when technology allows us to bring a five-star meal to our door without touching a set of car keys or a telephone. We can talk to family and friends from across the globe. And in fact, we can visit with a doctor in another city from our home. This is a beautiful progression in our quality of life in many ways, however, the most effective way to resolve issues within our healthcare system remains to sit on a phone for hours. We wait with our ears glued to little electronic boxes to find out why an important surgery isn’t covered by our insurance. We call our doctors for a request and wait to hear back hours or days later. We must increase the efficiencies of our healthcare system by providing easily understandable information about healthcare services, insurance plans, and medical procedures. We ought to invest in online platforms that offer information about healthcare providers, appointment scheduling, and access to medical records in a way that is legible. We need to let these disparate pieces of software and systems talk to one another.

Finally, we must take a deep and intentional look at our healthcare system. We have a dearth of qualified doctors, pharmacies are closing their doors, and people with chronic or acute medical conditions are going bankrupt, living without critical medications, or coerced into medical interventions. The United States healthcare system is a mix of public and private elements, leading to a complex interplay of interests and challenges. It is something that needs to be assessed, not just with economic interests in mind, but with a social justice lens that preserves and promotes the dignity of the individual, particularly those already navigating the complex management of a chronic condition.

Summing it up

The management of chronic conditions in the United States poses a significant time burden on individuals, challenging their bodily right to time. The stories of individuals like Anna highlight the complexities within our healthcare system, where shortages of primary care physicians, pharmacy crises, and profit-driven insurance practices contribute to the time demands placed on those with chronic conditions. Recognizing time as a bodily right, rooted in principles of individual autonomy and well-being, leads to a moral imperative to protect and support individuals facing these challenges. To improve time demands, efforts should focus on removing barriers to autonomy, increasing healthcare system efficiencies, and undertaking a comprehensive evaluation of the healthcare system. By enhancing access to healthcare interventions, leveraging technology for efficient communication and information dissemination, and addressing systemic issues through a social justice lens, we can work towards safeguarding the bodily right to time for individuals with chronic conditions.

We live in a country with a specific perspective on health — we admire the young and able-bodied, and we laud those committed to what we deem a healthy lifestyle of natural foods, clean living, and disciplined exercise. Alternatively, we cast down those we label “sick” including those with disabilities and chronic conditions. We make the implicit assumption that individuals with poor health are to blame for their ailments, that with a few lifestyle changes a cure is inevitable. This moral model of disability views illness as a result of an individual's moral or ethical shortcomings rather than considering external factors.

In 2022, the Centers for Disease Control and Prevention updated existing information regarding chronic conditions. This page explaining chronic disease reads in an unsettling, yet familiar manner. It identifies the most common chronic conditions, quickly following up with the economic toll for the nation (an estimated ninety percent of the United States’ $4.1 trillion in annual health care expenditures), and ending with major risk factors including tobacco use, poor nutrition, physical inactivity, and excessive alcohol use. That is not to dismiss the impact of said behaviors or the role of the CDC in prevention and public safety. However, ignored is the context of a chronic condition, the people behind the numbers, and other risk factors like genes, age, and family history, all elements beyond one’s control.

Continually we are told a specific story — that if you are sick, it is your own doing and it is costing our nation money. 

Discrimination during crisis

Never in modern history has this presumed burden of those with chronic conditions been more apparent than during the COVID-19 pandemic. While the early days of the pandemic were met with mask mandates and strict distancing guidelines, these were often thrown out or ignored, meeting the standard defense of personal freedom and economic success.

This is when the situation worsened for the one in six Americans living with chronic conditions. These individuals were thrown to wolves, left to protect themselves and fortify their bodies at the risk of an unknown assailant that was ever-changing and spreading. These people were relegated to their homes, not only fearful of disease but unable to participate fully in society. This was a nagging reminder that we look at those with disabilities differently, their personhood is challenged.

Although the COVID-19 pandemic brought this to the forefront for many living with chronic conditions, it existed before and continues to permeate our society. We have to ask ourselves what perspectives shape our views of sickness and health.

As a nation, we value health, not simply for comfort or what it affords us, but as a signal of one’s value and virtue. This is not a new notion, but something so deeply ingrained in the fabric of our lives as Americans that we don’t stop to wonder how we got here and how this degrades one’s humanity. 

America’s foundation

The United States was founded on religious roots with the arrival of the Puritans on the shores of what is now Massachusetts in the early 17th century. The Puritans believed in a strict interpretation of the Bible and sought to purify the Church of England from what they perceived as corrupt practices. They established colonies in America where they could practice their religion freely and create a society that reflected their beliefs. Puritan values such as hard work, self-discipline, and frugality were foundational to the American ethos and helped shape the nation’s political and economic systems. While America has become more secular over time, the puritanical influence on its founding principles and cultural identity continues to be felt to this day.

The Puritans believed that good health or “medical providentialism” was a sign of God’s favor and that they reflected something about a person’s character and piety. They also believed in predestination — a doctrine that holds that God has already determined who will be saved and who will not, regardless of their actions or beliefs. It is not a leap to understand that individuals who believed they were predestined for salvation viewed themselves as unique and separate from others. This superiority is a foundational characteristic of the religion on which America was built and speaks to how we view those deemed unhealthy. If God rewards those of good character with health, then He must punish those who are of poor character with sickness. God has predetermined the damned. The conceptualization of disability and illness based on religion extends beyond the Puritans and the United States, impacting modern, global societies.

Modern meritocracy

We see these foundations in our institutions in America today. We can follow the thread from puritanical roots to the popularization of neoliberalism and meritocracy in the mid-20th century. Meritocracy emphasizes that individuals should be rewarded based on their abilities and achievements, their merits. While it posits that we should ignore social factors that in the past have favored the wealthy, it also chooses to dismiss the historical and social context that has left the disadvantaged, including those with disabilities and chronic conditions, marginalized to start.

Political Philosopher Michael Sandel speaks out about meritocracy and its corrosive nature toward the common good. He highlights a flaw of meritocracy — it creates an “us vs. them” mentality by dividing people into winners and losers, the fortunate and the less fortunate. We attribute success to our own doing and neglect to understand that one’s position, including one’s health, is the result of our choices and not of circumstance be it luck or misfortune.

In relation to health, the “supercrip” narrative suggests that disabled individuals are required to surpass the accomplishments of non-disabled individuals in order to be considered valuable in society. This emphasis on individual achievement reinforces the idea that success is based solely on personal effort and talent while disregarding the systemic barriers and inequalities that may limit opportunities for people with disabilities and chronic conditions.

Philosophical roots

Our perspectives are not solely molded by our nation’s first colonists. We can trace these notions back to the fathers of philosophy Plato and Aristotle.

The concept of meritocracy can be found in ancient Greece, where the philosopher Plato advocated for the rule of “philosopher kings” who were chosen based on their wisdom and knowledge, rather than their social status or wealth.

Aristotle carried on the belief that power and rule should be in the hands of virtuous individuals who are capable of governing justly and for the common good. He also believed that good health was an important component of virtue. Therefore, the disabled were not thought to be capable of governing society and holding any form of power.

These foundations result in some obvious stereotypes about what it means to be virtuous and pursue the good life. Those with disabilities have committed a punishable offense, therefore we do not need to treat those people with respect. Those with disabilities are not virtuous and are, therefore unable to contribute to society. Those with disabilities have a lower quality of life, therefore their life is of lesser value and it is not up to us to provide for and respect human life. These assumptions challenge the common good, so what do we do from here?

We must think hard about where and how our beliefs take shape

It would be naive to believe that our impressions of disability and sickness are not shaped by the various institutions that formed the foundation of our nation. The democracies of Ancient Greece favored the virile, while the attitudes of the original colonizers toward disability were negative and stigmatizing. The strong beliefs of Puritans and predestination are seen in who is favored and who is condemned. The idea of individual responsibility alone as a measure of success and health can be documented in our modern form of meritocracy. It is up to each one of us to question the basis of our beliefs and if they have been made of our own logic or historical bias.

We must be aware of the language that we choose

“Nothing about us without us” is used by disability rights advocates to emphasize the importance of including people with disabilities in decision-making processes that affect policies and programs that impact them. This ought to apply to the language we use as well.

Even language framed in a positive light can have very distinct and different connotations for those with disabilities and chronic conditions. The term “survivor” is often associated with cancer patients, but can be problematic. For many, this term can feel as though they are tempting fate by ignoring the risk of recurrence and for those not deemed survivors, well are they losers? We see hints at this with the phrase, “She lost her battle with cancer.” In many instances of chronic illness, we use the term “warrior” to signify a hard conflict between body and will. This idea of battle leans into our modern meritocracy where we have winners and losers, those who tried hard enough and those who have not.

If we are choosing wide-sweeping language for swathes of people, we must listen and use terminology that is representative of their experiences. 

We must promote the common good

Promoting the common good involves working toward the well-being of all members of society. It requires a recognition that our individual interests and goals are interconnected and interdependent with those of others and that we have a responsibility to contribute to those most in need of support. We can do this by engaging civically (voting, writing lawmakers, running for office), advocating for policy change, volunteering and donating, and practicing empathy and compassion in our interactions. 

Summing it up

We use health as a signal to show us the worthiness of a person to be treated as a person. We ignore the cost, the emotional toll, and the pain and degradation associated with poor health until we are impacted. We do this because, from our worst perspective, the person with poor health must deserve it in some way, or, from our best perspective, the person must be grieved for or pitied. This allows us to ignore the human rights of these individuals and push aside healthcare policies that could improve the livelihood of those with chronic conditions.

We extol health as a virtue that tells us something about the goodness of a person. We do this not because of logic or reason, but because our institutions were built by “healthy” individuals who wanted power and prestige. Today, we can and ought to do more to understand where are biases begin and make cognizant choices about our language and civic engagement to promote the common good. 

My experiences with class-stratified health systems and unequal access to healthcare began when I was a child. I grew up in a lower-class household in the Appalachian Mountains with my mother and grandparents before moving into a home with my mother and father. The small town where I lived was built on two industries — the local hospital and the surrounding coal mines. One might assume some synchronicity between the two, but this was not the case. The hospital contained the bare essentials; any serious cases were airlifted to another hospital and specialists were hours away with months-long waitlists. People who worked in the mines thought healthcare wasn’t for them and that doctors didn’t listen. They repeated the mantra, “You go in healthy and come out dead,” about the small handful of doctors in the area. They proclaimed that having a critical healthcare procedure “cost an arm and a leg” but they’d rather sacrifice the leg than fight with their insurance provider.

My father was diagnosed with Multiple Sclerosis days before my fifth birthday. There wasn’t a neurologist in our town; my parents had to travel hours away for physician appointments. When I was sixteen I was diagnosed with Rheumatoid Arthritis, but this journey to an answer to my pain was not a short one.

When I was young, under the age of ten, I recall having “growing pains” in my knees and feet. One evening I was on my grandparents’ back deck, frozen in place, with pain in my knees that stopped me from taking the steep staircase from their backyard and across the lawn to my own home, only a few hundred feet. My grandfather lifted me into his strong arms and off we went. I thought that this type of pain was normal so I kept it to myself. These memories of “growing pains” were buried so deeply in my mind that I didn’t recall them until a few years ago. Occasional pain and aches were ignored. It was attributed to the way I sat and walked, the way I played, the way I practiced sports. I was young, it couldn’t be anything more.

One brisk morning, it didn’t seem normal. I was fourteen years old and had just finished an early morning track practice, but once again, I was frozen. My knees throbbed and I couldn’t, just couldn’t, bend my knees and lift my feet. I looked to the parking lot to see my parents’ car. Eager to get home to rest, I mustered up the courage and shuffled off to the car. Another moment that I pushed aside, craving normalcy, fearing that I would be ignored.

In high school, I started experiencing a noticeable change in my pain. I would step out of my bed in the morning, put my feet on the ground, and feel like I was walking on boulders. During the spring of that same year, I went to a concert with my best friend where we stood in a fantastically dingy club with cracked concrete floors for hours. We woke up the next morning and getting out of bed was particularly precarious. I turned to her to ask if she was experiencing any pain in her feet, and she agreed. I then went on to tell her that this happens every morning, and she looked at me confused for a few seconds before saying, “I think you need to see a doctor.” It was at that moment that I realized something could be truly wrong.

I told my mother about the pain in my feet and that it had been occurring every day for months. She whisked me off to our family doctor who did a variety of tests. He told me that he believed it was Rheumatoid Arthritis, but that I would need to see a specialist to confirm the diagnosis. The pain was mostly limited to my feet now that track season was over. I didn’t think it would get any worse. However, this new information seemed to mark the beginning of a downward spiral. I’m not sure if this was because of my confusion and anger or just the natural progression of the disease, but I started feeling immense pain in my shoulders, in my hands, and almost all of my joints. Drying my hair was difficult, getting up and down off the floor was nearly impossible, and keeping my energy for an entire day wasn’t an option. I was intolerable to be around, I’m certain. I was in pain, I was exhausted, I was angry.

My mother worked diligently to find a specialist taking new patients within the state. There was no one in our town, or the next town over, or the next town over. Our insurance coverage didn’t include anyone outside of the state, so the search continued. Once we found a few providers within the state we were overjoyed but quickly deflated when we learned that they wouldn’t treat minors. The disappointment felt infinite as my joints throbbed.

After a summers-long search and many denials, I had an appointment with a Rheumatologist. I went without concrete answers and treatment for several months, but finally, there was a path ahead. Just as we had done with my father years before, we packed our bags and traveled hours away for treatment. This was just the beginning of my journey.

Following my diagnosis, I’ve had triumphant moments, and moments of pain. I’ve found doctors who listen and those who ignore me. I’ve fought with insurance providers and cried over treatment denials. I’ve changed my diet and changed it back, and changed it back again. I rest when I need and challenge my body when I want. Since a young age, I’ve realized that the challenges within healthcare are as chronic and persistent as the condition itself. The unrelenting battles include convincing an insurance company to cover a critical medication, negotiating prices with pharmaceutical companies, finding a doctor who is willing to believe you, and having the autonomy to treat your condition.

As I navigate and manage my health, I am driven by the belief that our experiences contribute to a broader conversation about reshaping the healthcare landscape. Access to healthcare is not a privilege but a fundamental right. In embracing this principle, we pave the way for a future where everyone can access the empathetic, thoughtful care that they ought to have.