Ms. S was sick, sad, and stubborn. According to her chart, she was in her 40s, but her eyes suggested an additional decade of struggle. I asked her how she felt as I began my typical battery of questions regarding her neck cancer, tracheostomy, and pneumonia (for which she had been admitted countless times) when she began crying. Startled, I requested an explanation. She said she was physically and mentally exhausted—simply sick and tired of life. I listened attentively and did my best to provide a few words of encouragement, despite the distraction of her smoke-saturated hospital gown. When I returned later, my disheartened patient was outside smoking.
Over the years I’ve had many difficult patients, each inducing an intense sense of frustration and varying degrees of contempt. However, it’s my cousin who ignites my empathy.
While she was in junior high, my cousin was diagnosed with Crohn’s disease. All I understood then was that her intestine had problems that were making her sick. A few years later, I stood next to her surgeon as he sketched her colon, identifying portions he needed to remove. My beautiful cousin sat in the hospital bed quietly listening, clutching onto her strength and courage.
The following years brought a barrage of medications, significant weight fluctuations, and damage to her self-esteem. Later she was given a second diagnosis of ulcerative colitis, which surprised me more than her. In her 20s, she’s suffered through frequent hospitalizations, job instability, and a pregnancy complicated by three intra- and retroperitoneal abscesses.
Although my cousin is still strong, courageous, and beautiful, inflammatory bowel disease has impaired her ability to recognize these traits in herself. Sick and tired of being sick and tired, her compliance with her physicians’ orders has declined. Over the last year, she’s spent approximately one week per month in the hospital for intolerable pain due to noncompliance with dietary recommendations or medication prescriptions. She thinks of me when she finds herself reciting her medical history five times for the nurses, medical students, interns, residents, and attendings. She controls her irritation when they wake her at inconvenient hours with treatment plans that, based on past experience, she knows won’t work. Her frustration persists, and during every conversation, I faintly hear that same tone I heard from Ms. S years ago. In an attempt to compensate for my physical absence, I provide advice as a physician, followed by support as a friend. Then I pray she finds the strength and courage that’s buried beneath all of the inflammation, adhesions, and infections.
As painful as it is, I have to remember these moments when I encounter yet another difficult patient. I think of her when the nurse tells me my nil per os patient with the enterocutaneous fistula has whole Cheetos in her stoma bag. I hide my irritation when I confront that patient who then denies taking anything by mouth other than ice chips. And I sigh when that patient is discharged, knowing she’ll be back soon enough. Regardless of how challenging it may be, it is my cousin who reminds me that even difficult patients need our empathy.