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The Unknown Hurts, Too

A medical student’s illness comes full circle

The New Physician January-February 2010
It started my third month of medical school. First, my left ribs felt sunburned; then, there were sharp needles pricking me. By summer, the discomfort was distraction enough that I saw a doctor who, like me, thought it was simply “medical student hypochondriasis.” A normal spine film supported that diagnosis.

But the pain worsened, and I winced my way through the first semester of my second year before seeing a neurologist. He ordered a battery of blood tests and, “to be thorough,” a chest X-ray. Excited to see my heart and lungs, I picked up a copy of the film as I left the radiology suite and ran the ABCs: Airways looked normal; bones were fine; the cardiac silhouette was appropriate in size and shape. But something was wrong. Behind my heart lurked a perfectly round shadow the size of a ping-pong ball. I skipped D through F and went straight to “P”: panic.

When I called my neurologist about the strange mass in my chest, he seemed guarded and distant. No matter how much I asked, he declined to speculate on the X-ray. Instead, he counseled that I “try not to think about it” and wait for the official radiology report. But I couldn’t think of anything else, and in the days that followed, lectures on hematology/oncology made it impossible not to fear the worst.

The radiology report returned a week later suggesting a paraspinal neurofibroma, but did not rule out malignancy. The results immediately triggered a cascade of questions, none of them easy to accept. Was it malignant? Did I need surgery? Did I have a genetic disease? The answers, unfortunately, were much less forthcoming.

It took a year of specialist appointments and tests to elucidate the scope and implications of my tumor. I had MRIs of my back and brain followed by a CT-guided biopsy, and saw neuro- and cardiothoracic surgeons, as well as a neuro-ophthalmologist, a geneticist, and finally an expert in neurofibromatosis. For 12 months, I felt scared for the worst, fragile and isolated. Pain triggered a deluge of “what ifs?” and anxiety made everything more difficult, including medical school. To dull the incessant needle pricks, I wore lidocaine anesthetic patches and took amitriptyline, a medication used to treat neuralgia, which brought the additional challenge of fighting drowsiness while studying for Step 1.

Through it all, I harbored hopes that the entire ordeal would magically resolve with the next test or doctor’s visit, but it never did. I came to resent the disruption to my life and the rebuffs that I felt from some of my physicians, whose approach to addressing my fears was to assure me that the experience would “make me a better doctor,” rather than to help me confront why I was scared. Sometimes the uncertainty hurt more than the physical pain.

I was on the operating table a week after completing Step 1 and about eight months into the yearlong workup. The biopsy had returned benign, but worsening dysesthesias made me want the neurofibroma removed. Before the operation, I agonized over the potential complications of thoracic surgery and the looming prospect of genetic disease, but the recovery proved even more draining. Long after my chest tube had been pulled, my ribs stung at the slightest touch of my shirt. I thought the pain would never stop and doubted my decision to have the tumor removed. Thankfully, the pain slowly remitted, and in a few months, one of my doctors answered the question that had tormented me most.

“You don’t have neurofibromatosis 1.”

By then, a year after the initial chest X-ray, I was so busy with clinical rotations that I had already forgotten how overwhelming it was to be sick—until one patient brought it all back. I was caring for a woman in her mid-30s with pancreas divisum and chronic epigastric pain. Attempts to resolve her years of mysterious discomfort led to endoscopic retrograde cholangiopancreatography. The procedure was uncomplicated, but days later, she wept at the slightest hint of hospital discharge.

Sensing that anxiety was behind much of her suffering, I asked about her fears. As a working mother of three, she was desperate for stability. She wanted a definitive answer on when her life would return to normal but instead received the unwelcome promise of further tests, follow-up appointments and more questions. She told me that the unknowns of her disease were daunting; I empathized but explained that learning to live with them was part of healing. As her tears slowed, I offered the reassurance that I had wanted from my physicians: “It may take time to heal, but your doctors will be with you.” The next morning, she asked to go home.

Although I didn’t want to hear it at the time, my physicians were probably right: Being a patient will make me a better doctor. Now I know firsthand that living with disease is different from diagnosing and treating it. Compassionate as they were, my physicians were not pained by the unknown. They had more patients to care for, more differentials to construct, and more tests to order. When I left their clinics, the questions surrounding my tumor left with me. Uncertainty consumed my patient’s life, too, but the team’s white coats kept it from consuming theirs.

Not knowing may trouble physicians, but it can hurt patients, emotionally and sometimes physically. One of the most important challenges of medical training is recognizing that, although our interactions with disease are increasingly defined by objectivity, multiplicity and brevity, our patients’ encounters with their own diseases are quite the opposite. Their responses to illness can be emotional, singular and all-consuming, especially when they must face unavoidable unknowns. Part of becoming good physicians is learning to help our patients manage the feelings that arise from uncertainty. With reassurance and partnership, even when we don’t have all of the answers, we can help them heal.

Christopher S. Sáles is a fourth-year M.D.-M.P.H. candidate at Tufts University School of Medicine. Dr. Stephen Pauker and Larisa Bowman provided editorial assistance.