Physician, Hear Thyself

Giselle Potter
I sat in the sterile exam room, all white walls, white tile and fluorescent lights, filling out the questionnaire. Was I fatigued? Yes. Did I have headaches? Yes. Nausea? No. Weight loss? Yes, a little. Was I irritable? Yes, I was very irritable. Was I suicidal? Most definitely not. Homicidal, maybe. But really, more just hateful. I hated my symptoms. I hated being there, every two weeks, in that exam room. I hated that stupid questionnaire, asking me the same annoying questions that I’d answered, in the same way, two weeks earlier, and two weeks before that, and two weeks before that.

There was a reason for the questionnaire. It was data collection for a study on an experimental treatment for hepatitis C, a study for which I was a subject. The study protocol was interferon alpha injections three times weekly and ribavirin pills daily. The drugs were supposed to boost my immune system to fight my chronic hepatitis virus. I’d been on them for several months, but the protocol dictated a year of treatment. I had a long way to go, and I’d already relapsed after two drug trials of interferon alone. I’d most likely contracted the virus during my medical residency in the late 1980s, and I’d had it at this point for at least seven or eight years. The virus was isolated in 1990, so that was when I was diagnosed.

The interferon caused flulike symptoms: body aches, headaches and low-grade fevers. The ribavirin gave me anemia and severe heartburn. But I was determined to finish. I was young, fresh out of medical training. I had a husband and two little children. Maybe my training had toughened me. After all, 36-hour shifts, taking responsibility for 50 patients at a time, and pounding on dying people’s chests were painful things to do. Was a year of toxic medication really worse, even if there was only a 25 percent chance of eradicating the virus? The truth was, though, that I might have had more fear than many other patients. While the majority of hep C patients live a long time without serious consequences, I had seen the worst cases, the ones with severe liver damage. I was terrified that I would end up with a liver transplant or die of cirrhosis. I was consumed with worry about what would happen to me and to my family.

The doctors I encountered in this journey did little to ease my fears. At worst, they were rude and tactless, more worried about data than about my well-being. They gave cursory information and became annoyed if I asked too many questions. At best, they tried to be kind, but seemed unable to address my anxiety. Since I was not in immediate danger, it was as though my illness wasn’t a “real” problem. Everyone bustled around me, leaving me feeling isolated and hopeless.

I lived with hep C for almost a decade before the dual drug protocol put my virus into remission. Looking back, I think the most painful part of the experience was neither the disease nor the treatments. It was the terror.

Through this experience, I came to believe that anxiety and worry are often the most disabling facets of illness. If physicians are to be healers, not just technicians, we need to acknowledge the fear and stare it in the face alongside our patients. I often hear trite phrases, presumably meant to make someone feel better when there’s been a tragedy or serious turn of bad luck, or really any kind of human suffering. “Things happen for a reason.” Or “What doesn’t kill you makes you stronger.” These “comforting” adages make me cringe. It’s clear to me, witnessing the pain, suffering and death that I do as a primary care doctor, that each person, each circumstance, has its own psychological wake. I’ve seen people gain a new lease on life through suffering, but I’ve also seen it devastate families and embitter patients.

I have also come to see just how much of the suffering I endured came not from my disease itself but from my notions of sickness and health, society’s notions of it, and the medical system’s treatment of the disease rather than the human being.

“In the sufferer let me see only the human being,” says the oath of Maimonides. This, rather than the Hippocratic oath, is what hangs, framed, above my desk at work. I will never live up to it perfectly, but I will keep trying.

Rosalind Kaplan is a clinical associate professor of medicine at Temple University Hospital in Philadelphia.