A "Good" Patient

Abstract

A "Good" Patient Erica C. Kaye All I wanted was to be a mother. The yearning was an animal thing, instinctive and unconstrained, fierce and precarious. Everything else became surrounding noise. Each day, I went through the motions; but in a parallel world, fragile hope cyclically fractured, again and again. I've struggled with infertility and pregnancy loss for as long as I've been a doctor. Most memories from my medical training and career are tethered to the pain of childlessness. On 24-hour shifts, I hid in an empty parent room in the pediatric intensive care unit, injecting hormones into my knotted backside. Three hours after transferring a fragmenting embryo into my inhospitable, cramping uterus, I led a memorial service at the hospital for children who died. I received the call that I was not pregnant while sitting on a crowded city bus on my way to staff a resident clinic, tears streaming down my face. A decade later, the memories are still raw. Like visceral imprints, they silhouette and contour my sense of self. Across my training, so many people told me who I was "supposed to be." A dedicated clinician, dependable colleague, erudite researcher, thoughtful educator, devoted mentor. I tried hard to meet everyone's expectations, but I was compressed by misery. In my guts, I knew that what I was supposed to be was a mom. Anxiously, I sought out fertility treatment. As a physician, I thought I was prepared to navigate the healthcare system as a patient. In retrospect, I was brutally naïve and inexperienced. I was training to become a pediatric palliative care physician, and I saw the practice of medicine as a pathway towards holistic care for a person's physical, emotional, spiritual, and social wellbeing. I was learning to ask patients about their goals, values, hopes, fears. To see the whole patient and wonder about their personhood. To prioritize their dignity and humanity. When I entered the fertility healthcare system, I was disoriented and scared. The clinic was a cold, sterile space. When I felt invisible, I blamed myself for not being savvy enough to navigate the system. I think a part of me believed that, if I was a "good" patient, someone in the system would see me and care. It was strange to be wholly unseen, and yet completely, grossly exposed. Infertility stripped me bare—bodily, mentally, financially, existentially. I was systematically surveyed for defects, my failings interrogated, the broken parts scrutinized. Problems without a straightforward fix were discarded. Healthcare professionals calculated the sum of my deficits with ease, but no one noticed a person drowning in grief. Medical training conditioned me to take up as little space as possible, to apologize for the inconvenience that my issues or worries might cause for others. The fertility clinic made repeated mistakes: incorrect prescriptions, instructions that didn't make sense, communication breakdowns. But I was too overwhelmed to question or examine things closely, and I was incapacitated by isolation. My husband, also in medical training, was living in another state. We had not told anyone about our [End Page E1] infertility struggles, and I shouldered the weight of navigating my medical care alone. It's hard to think back to those days. Grief was a physical hole in my chest, sucking out air. I didn't know how to function, to be whole again. Anguish born from invisible, intangible loss is intense and alienating. I felt guilty about my degree of suffering when I lacked visible scars to justify the wound. Practically, I didn't have the emotional bandwidth to explore or tend to my grief; I was too overwhelmed and drained by the stamina needed to steer through a disinterested, chaotic healthcare system. After residency, I joined my husband in another state. We were devastated to learn that, in crossing state lines, we had lost our fertility coverage. We found a new clinic in the area and began draining our hope and savings. Across two subspecialty fellowships and an early faculty career, we did multiple IVF cycles and mourned the loss of five desperately wanted pregnancies. It was the darkest time in my life. As hard as it was...