When I was 13 years old, I had to take 11 pills every day. I had non-Hodgkin’s lymphoma, and these pills worked either to fight the cancer or to prevent the complications that arose from the cancer-fighting medications.
One of the pills, methotrexate, stopped cancer cells from copying their DNA. But it also damaged the white blood cells that fight infection, making me predisposed to a certain insidious pneumonia. To prevent the pneumonia, I took the antibiotic Bactrim. Another medication called prednisone also worked to kill lymphoma cells. One of its side effects is stomach ulcers, so I also took omeprazole, which decreases stomach acid. And so on.
My parents and I had a system for taking these medications. They would fill a pillbox each week and my mom would deliver the day’s medicine to my room each morning. She brought it in a small paper cup, the single-use kind that dentists fill with mouthwash after a cleaning. Some of the pills, like prednisone, were bitter and hard to swallow, so the pills were accompanied by a tall glass of orange juice.
I can recall clearly the look of each pill against the white cup: one a neon orange capsule, another half pink and half black, a third small and white and round.
I cannot recall the exact moment when I decided I would stop taking them.
The classic term for patients who do not take their medication is “noncompliant.” Descriptions of patients not abiding by their prescribed treatments stretch back to the time of Hippocrates. But this specific term did not emerge until the mid-20th century.
Since then, it has received enormous and well-deserved attention as a major cause of adverse medical outcomes, and it has been the topic of thousands of peer-reviewed papers. Up to half of patients in the U.S. take their medicine incorrectly or not at all. The reasons for this are numerous and complex, including factors such as cost, lack of health literacy, and denial.
Over the past several years, there has been a purposeful shift in language away from the term “noncompliant” toward the term “nonadherent.” Merriam-Webster defines comply as “to conform, submit, or adapt” whereas to adhere is “to give support or maintain loyalty.” Compliance connotes passive subservience while adherence means actively giving support to something. In this way, proponents argue, nonadherent invokes a greater degree of agency among patients.
Now that I am a doctor, I appreciate the sentiment behind the change. Yet on rounds in the hospital, I have heard colleagues say, “The patient has a history of being nonadherent to medication” in a way that is dripping with blame. On the one hand, I identify with the frustration of the physician. On the other, I can feel firsthand the sting of his words, knowing that this “history of being nonadherent” label applies to me. The language can change, but the stigma stays the same.
Physicians encounter this problem almost daily in ways big and small. I have taken care of a man who had undergone a successful liver transplant only to be hospitalized countless times afterward because he was not taking his antirejection medications. He nearly died during his last admission. On rounds, the liver specialist I worked with, who had known the man for more than 10 years, started crying as she discussed his case, admitting, “I just don’t know what to do.”
Looking back on my own reasons for not taking the medications I needed is like looking through a frosted glass window: The image is there, but it’s distorted and hazy. I remember I would pluck the chemotherapy pills — the ones actually killing the cancer — from the paper cup, leaving behind the ones that prevented complications. As I swallowed the selected few, I would crumple the paper cup into a ball wrapped around the remaining pills and leave it on my desk.
What could cause an informed, admittedly type-A person to make such an irrational and dangerous decision? My age at the time certainly played a role: Executive function is not primed in a 13-year-old. But I don’t think age explains what a nuanced move it was for me to stop taking some pills but continue taking the chemotherapeutic ones. While the medications I continued weren’t necessarily more important than the other medicines (and if anything it was more acutely dangerous to stop taking the others), they were the ones actually treating a known disease, while the others were all preventive. This choice reflects a sophisticated understanding of the purpose of each medicine.
Was it side effects that led me to discontinue the drugs? Probably not. The medications with the worst side effects were the ones I continued taking, the chemotherapies. Prednisone in particular ravaged me with its weight gain, muscle breakdown, skin thinning, and insomnia, to name just a few of its many side effects. The medications I stopped taking didn’t bother me at all.
Other possibilities come to mind, but they, too, aren’t sufficient explainers. Cost, fortunately, wasn’t an issue for my family and our insurance plan. I had the emotional support of incredible parents, siblings, and friends. Nor was I in denial about a symptom-less disease, as are many patients with “silent” illnesses like high blood pressure. After all, my presenting complaint was a tumor bulging conspicuously out of the side of my head.
My decision was, in a small and inappropriate way, my way of asserting control in a world that was spiraling out of control. My body with its bald head, stretch marks, and toothpick-thin legs was foreign to me. My days filled with hours of television, doctor’s visits, and seemingly endless vomiting were so different from the days of sports, school, and friends I had been pulled from. I did not want or choose to be sick, so I decided I would not adhere to the medical regimen that had been imposed on me.
My act of defiance didn’t last long. After all, I left the unswallowed pills on my desk for my parents to find. It ended after a week with my dad, tears in his eyes, sitting me down and telling me how important it was to take all of my medicine, every day, so I could get better.
So that’s what I did. And I got better. I have been lymphoma-free for 13 years.
I don’t pretend to have the answers to solve the epidemic of nonadherence. If anything, I tell my story to highlight the distinct psychological challenges of the ill and the way in which it is so hard for healthy people — my current self included — to understand them.
I do know that during my training in internal medicine and beyond I plan to approach “nonadherent” patients with humility and compassion. I feel sad when I think back to the liver transplant patient and how the judgment-laden thought, “How could he not take these lifesaving medications?” crept into my mind, knowing the same question could have been asked of me as a cancer patient. I’ll do my best to turn that exasperation into empathy and transform the question into a statement for nonadherent patients: “Being sick is really hard.”
Jessica Stuart is a resident physician in internal medicine at Brigham and Women’s Hospital in Boston.