This dichotomy in American health care is well-known to patients with chronic illness.
That first fall from health can’t be traced to a dramatic event. Like many chronic illnesses, there’s no clear beginning or end, the linear narrative warped to the whims and waves of symptoms that rear and relent. It’s easier to think of that fall in abstraction, relying, as the ill often do, on metaphor: a fall from the good graces of the medical system, a fracture in a structure you assumed would always be there. Suddenly your feet are in a different position; what’s left is for you to brace for impact and hope you don’t shatter.
Three months after the initial Covid infection in March 2020, I went to the ER to investigate the pain lighting up my chest cavity. At this point, my husband,Marc, and I were constantly short of breath—using a notebook to communicate when we could no longer speak. Neither of us could work a full day—fatigue blanketed us like heavy snow by afternoon. Yet tests at the ER revealed nothing abnormal. I asked for referrals to specialists, but no one believed we could still be ill. Because our symptoms were often invisible, they weren’t considered signs of disease warranting care.
“If we had a diagnosis of, say, West Nile,” an infectious disease doctor explained in July, “I would go to databases where there would be established treatments to follow.”
I knew no such data banks existed for a novel disease such as Covid. Until they did, this doctor made clear, no treatment would be forthcoming. But where did that leave millions of unfortunate forerunners, patient zeros who might be learned from through studies but who were out of luck when it came to real help?
My voice cracked as I spoke. The specialist turned to her prescription pad and began scribbling an order for anxiety medication.
I was, in that moment, anxious to be heard. My upper torso felt like a bombed-out shell, but I had no proof of the ache swaddling my lungs. Instead, I flipped through iPhone photos to demonstrate what my skin did after exercise. I didn’t know what to call these abrasions that appeared as something between a rash and a bruise—there didn’t seem to be a word on the continuum between these two known phenomena. But over the past months, the only time I’d felt a doctor’s belief was when I brought out the photos, sometimes holding my phone’s camera to my laptop’s screen, where a large-format picture of the offending patch of skin showed itself.
“Oh!” I’d hear the physician on the other end of the telehealth call respond, followed by a more reserved, “Oh,” as in, there is something wrong, and then they’d defend their prior doubt by blaming me for not describing it accurately, as if I’d intentionally incited their disbelief by calling it a rash or bruise.
My explanations only reinforced the specialist’s diagnosis. “I’m going to suggest you see a mental health therapist,” she advised, handing me the prescription I would never take.
Eventually our condition would be given a name: Post Acute Sequelae of Sars-CoV-2 by the CDC, Long Covid by everyone else.
American health care is built on a scientific basis that requires doctors like my infectious disease specialist to depend on verifiable evidence—a foundation that goes back to the Hippocratic idea of doing no harm. Of course, in Hippocrates’s day, physicians had to rely on anecdotal evidence to make diagnoses and prescribe remedies. Hippocrates himself placed the patient at the center of his observations, recording case histories that took into account a person’s life experience while observing how their symptoms developed.
But as the sources of disease were revealed through the new technologies of the nineteenth century, diagnosis began to depend on the quantifiable and visible. Within a year of Wilhelm Roentgen’s discovery of the X-ray in 1895, doctors were using their newfound vision to identify what was broken inside. Around that same time, scientists like Robert Koch and Louis Pasteur were developing germ theory—the idea that illness can be caused by the viruses and bacteria they saw magnified beneath microscopes. As physicians turned to biomedical models of disease, health care focused more on the relationship between a microorganism and its host than between a doctor and patient.
Today we often rely on lab work to make diagnoses once determined through observation and by listening to patients. While advances in medical technology save lives, attention to the experience of the sick has been lost to the assumption that all disease can be revealed through X-ray, scan, or slide. Faced with unflagged bloodwork or a clean image, doctors often dismiss what patients tell them about their own suffering, forgetting that not all that is wrong with the world is discernible through tests.
Research into the biomarkers that define Long Covid will take time. As we lack scientific knowledge around this chronic illness, there should be room for patient stories to enter the conversation. Covid offers an opportunity for patient-led studies and research shaped by those who are ill, who are often experts of their own experience.
As we lack scientific knowledge around this chronic illness, there should be room for patient stories to enter the conversation.
When no amount of imaging revealed my long illness, I began translating my symptoms into language I thought my physicians would hear: to quantify rather than describe. The sharp pains cutting through my chest became daily tallies. I took readings of my elevated heart rate, demonstrating the leaps it made when my body went from supine to vertical. My pain had not spoken through the tools of medicine, so I did my best to conform my experience to the demands of science, though I had no energy for such efforts.
The attempt backfired. When I presented my homemade charts to a cardiologist, she appeared offended. “Everyone’s paranoid,” she told me. “You’re just dehydrated.”
“I’ve been sick for nine months,” I objected.
She crossed her arms, as if barring the way forward. “See a psychiatrist.”
No one is going to suggest a therapist now, I thought, staring at my arm, which had begun to ripen on the underside—bruised and swollen in places I could only see in a mirror or with the selfie function on my phone. Over the weekend, as my fingers turned to sausages, we’d wrestled off my wedding ring and waited for my doctor’s office to open on Monday.
Only one phlebotomist had made it in that morning, as I sat in a waiting room shared by those of us sent there for imaging and others waiting for blood work. As a result, the administrator signing in both groups was short with patients. But when I stepped up with an empty coat sleeve hanging like a deflated windsock, she smiled through plexiglass, steadying a clipboard for my signature. “Let me guess, we’re x-raying your left arm.”
Another sympathetic receptionist had squeezed me in to see my doctor, who’d sent me to the lab, where an X-ray tech sat me at the end of a table and slid a machine overhead until its white light, crisscrossed by shadow, settled across my swollen limb. After a series of images, he asked me to extend my arm, but a burning sensation made me cry out.
“It’s okay,” the tech soothed. “I know why that hurts. I know what it is you’re feeling there.” He wasn’t allowed to interpret the images, but he assured me my anguish was justified; there was a reason I felt the way I did.
As the tech left the room to take the final image, I let myself cry a little more, let him think my tears were from the pain. After the lack of empathy I’d encountered in countless exam rooms, his simple acknowledgment felt healing in a way that had nothing to do with my broken arm.
The following day at the orthopedist’s office, I was won over by my surgeon’s enthusiasm for the break, by the way his biceps flexed pleasingly as he demonstrated the full range of motion I may or may not regain after he operated on me. I reveled in the visual evidence of the X-ray, soaking in the nurses’ sympathy as we hovered over the grisly image of the splintered bone.
On the day of surgery, I’m hustled into an empty hospital bay, where two nurses tent my body in a gaudy gown. A pillow is tucked under my broken arm, heated blankets wrapped about my shoulders. With an IV in my right arm and a pink bracelet around my left warning Limb Alert, I feel pinioned to the bed by care.
A pause, and then I’m wheeled through hospital halls. Double doors open onto a cavernous operating theater. I crane my neck and meet the gaze of about eight masked individuals, all watching the grand entrance of their patient.
A week later, a plaster splint is cut from my arm. In the X-ray I’m shown, my bones are realigned with two screws that seem to glow white-hot at the joint. The site of incision is a dark line beneath white tape, highlighted by fluorescent-blue surgical thread, a single stitch at the center. When, another week on, a nurse removes the sutures, he deftly clips this loop, pulling one thread out one end of the wound and the other from the opposite side, a slight stinging sensation following its path beneath the skin.
When our medical system works—for those able to afford co-pays and monthly insurance fees who have not been shut out by the racism, sexism, ableism, and other forms of oppression embedded within that system—it can function beautifully. Yet in the weeks following surgery, I’d struggle to reconcile modern medicine’s ability to restore my fractured arm with the abandonment I’d felt during the chronic pain of the post-viral syndrome—a pain compounded by the lack of recognition, which, I now knew, would have been relinquished had what was broken been visible.
This dichotomy in American health care is well-known to patients with chronic illness. “Our system is great if you need surgery,” Meghan O’Rourke writes in her book The Invisible Kingdom: Reimagining Chronic Illness, “But when you are suffering day in and out, it feels terrible to go to the doctor’s office and barely be spoken to.”
As my arm mended, the consideration I received under its auspices worked as a salve—I used it to comfort that battered part of myself flattened by too many doctors’ stares under fluorescent lights. I soaked in the long-desired care, past the superficial break, to the wound of having been broken and not having been seen.
The fracture acted as substitute, but the attention it garnered brought that other, deeper pain into pace with my long recovery from Covid. Now I have some measure of the standard of care my invisible pain deserved. Now I know what to demand, either for myself or others, should we fall sick with something yet to be seen by science.
And I know until we have the resources to understand a novel condition, we need a system that suspends disbelief, applying imagination to patients whose ailments can’t be discerned by modern medicine. That requires us to submit to the unknown, to sit with the sick in it—sometimes for a long time—and to listen with attention to the testimony of the ill, rather than turn, disinterested, from each other’s pain.
It takes a while for the Steri-Strips to fall away from the site of the surgery, first curling at the edges, then, one by one, losing their grip. Underneath, a thin lavender line is visible, curving along the outside of my elbow. I have my scar.I have my story.
Jodie Noel Vinson holds an MFA in non-fiction creative writing from Emerson College. Her work has been published in The New York Times, Harvard Review, Literary Hub, Ploughshares, Electric Literature, Agni, Creative Nonfiction and The Rumpus, among other places. She is the recipient of the Arts & Letters Susan Atefat Prize for Creative Nonfiction, the Ninth Letter Literary Award in Creative Nonfiction, and the Maureen Egen Writers Exchange Award from Poets & Writers. Jodie lives in Providence, where she is writing a book about the intersections of chronic illness and creative expression.