Approximately five hours into my first chemotherapy infusion, the muscles in my back began to spasm. A little at first, but then quickly the spasms grew stronger and stronger, until it felt as if the muscles were being ripped from my bones. Newly diagnosed with breast cancer, I had been medicated with steroids for a long and taxing treatment, but even so, my body had a rare reaction. My face turned a deep red. My blood pressure spiked. I couldn’t speak, couldn’t see, couldn’t breathe. I became sick with the pain.
Very quickly, the small room flooded with nurses. My oncologist was summoned over the P.A. system and ran in just in time to find me arching out of the semireclined vinyl chemo chair. After what seemed like an eternity, they pumped enough Benadryl through my veins to get the reaction under control. When I was coherent again, the first words out of my mouth were “I’m sorry.” Immediately followed by “I’m fine.”
As a former nurse practitioner, I know I’m not the only patient to behave this way. For every sick person who’s loud or demanding or belligerent, somewhere within a medical suite there’s another who’s sugarcoating, suppressing or understating her pain.
The impulse shows up in many ways. Answering providers’ questions with what we think they want to hear. Saying yes when we want to say no. Holding our tongue when we sense something may be wrong. In the face of dire circumstances — devastating diagnoses, shattered realities, excruciating physical pain — there’s a desire to be easy. Flexible. Polite. It’s almost as if we’re auditioning for a role we’ve created in our heads. The role of the perfect patient.
From an early age, we’re all taught to seek the approval of authority figures. In many households, children are taught to placate their parents or face punishment. Students learn to follow teachers’ directions or risk receiving poor marks.
Physicians are perceived by many as the ultimate authority figures. They’re busy professionals in one of the highest-status occupations in America. They hold the knowledge to heal us but also the power to harm us. We worry that if we make things too complicated, they might care less about us. And for good reason: In a study of more than 2,000 patients, those who suffered from medical professionals’ diagnostic errors were twice as likely to be described with stigmatizing language in their medical records. Once labeled difficult, patients were more likely to face barriers and receive poor care.
Receiving good health care in America is not just about finding good doctors. Patients who disagree with their doctor can be “fired” or flagged with scarlet letters in the corners of their electronic medical charts. “Exaggerating.” “Resistant.” “Noncompliant.” “Hysterical.” To be sure, there are problematic patients, even dangerous ones. But for the rest of us, the imbalance between our defenselessness and the doctor’s discretion can create an unhelpful dynamic, one that pushes us to stop advocating and start accommodating. The result is waiting rooms full of people pleasers and providers who never get the full picture.
The pressure to be pleasant and pliant is especially strong for women. Just as “bossy” women often don’t get promotions and “uppity” women are more likely to be sexually harassed, women who are branded as difficult patients are at risk of not being taken seriously or losing access to care. This is one of the reasons women overapologize, even for their own pain.
A simple disclaimer — “I don’t mean to be difficult, but …” — can backfire as well. (I can’t help worrying that having this article published will offend someone and earn me a label of my own.) Swallowing our pain is particularly dangerous because extensive research shows that even when women and men have the same symptoms, physicians frequently take longer to diagnose conditions in women — and when they eventually do, they often prescribe women less pain medication. For patients who are members of minority groups or lower income brackets or who don’t have health insurance, the pressure to acquiesce may be even greater.
Doctors can’t be expected to recognize every time patients hold their tongue or downplay their pain, but it is the doctors’ responsibility to create a climate of psychological safety so patients feel comfortable speaking. Within the past two decades, medical schools have begun offering more courses in emotional intelligence, communication and listening. This is a step in the right direction, but it’s rarely enough. Patients are still afraid, and the health care system is a scary enough place as it is.
As a cancer patient, even six years later, I feel fortunate to have providers who go out of their way to let me know my job is not to please them but, rather, to tell them how I’m really feeling, so that they can help me.
Patients should never feel they need to hide their emotions in order to appear agreeable, minimize their symptoms in order to be taken seriously or apologize for their pain.
Is that rude of me to say? I don’t mean to be difficult. I’m sorry. I’m fine.
Allison Sweet Grant’s “Lump: A Memoir in Ineloquent Reflections,” about her experience with breast cancer, is forthcoming.
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