Narrative Medicine Lecturer Olga Lucia Torres was a New York City criminal defense attorney while managing multiple chronic illnesses when she discovered Columbia’s Narrative Medicine program. Right then, she decided to make a career change and return to school to earn a master’s degree. She now teaches Social Justice and Narratives of Inequality in the Narrative Medicine program. The course guides participants in tailoring narrative medicine pedagogy to specific learners: health-care professionals, students, clinical trainees, patients, families—even those outside of health-care settings. It enables participants to specify learning objectives and design a curriculum.
Here, she writes about the patient experience of going to a doctor’s appointment and the narrative medicine tactics developed by Rita Charon, the founder of the field who inaugurated the Master of Science in Narrative Medicine program at Columbia.
By Olga Lucia Torres
Your right hand has started to tremble and you don’t know why, or maybe you feel an undulating pain in your right side and suspect something is wrong with your kidneys or your liver, or wait, maybe it’s your gallbladder. (Where the hell is your gallbladder, anyway?)
You then realize you can’t diagnose yourself on Google, so you make a doctor’s appointment. You think of questions and concerns you want to mention—like you just stopped taking this medicine and started taking that medicine. Or your knees hurt when you stand up. And, by the way, you seem to pee a lot at night. Are they all connected in any way?
Then the day of your appointment comes. You’re sitting in an exam room alone and undressed from the waist up. You’re just waiting. All of a sudden, the door flings open. You see the white lab coat, and bam, you go blank. Or maybe you start to ask a question about your knees or your right hand or your gallbladder, but your doctor cuts you off, dismisses your theory or concern. You cross your arms over your chest and try to breathe, feeling unheard, unimportant, scared even.
This phenomenon is called white coat syndrome, and it’s a real problem that causes everything from doctor avoidance to misdiagnosis. In fact, one in five patients becomes so nervous that their blood pressure increases to numbers they have never seen before. That’s known as white coat hypertension.
All that is to say that there’s an inherent vulnerability with being ill—and often our relationship with our doctors is fraught, making it difficult to speak up and advocate for ourselves.
Enter: narrative medicine.
In the 1990s, Dr. Rita Charon, a general internist and literary scholar, and her colleagues started narrative medicine. They wanted to become better listeners and, in essence, better readers of their patients’ stories. Focusing on research and experience, they came up with three important tenets that all practitioners could follow to ensure the best care possible:
Attention means to selflessly focus on the patient and listen.
Representation is to witness and record what happens in the room, to co-create the patient’s story of illness.
Affiliation is to garner trust in order to create better relationships with patients and colleagues.
(To learn more about Dr. Rita Charon’s philosophy and way of practice, check out her TED talk: Honoring the Stories of Illness.)
When patients go to their health-care providers for medical care, they risk so much by sharing their illness stories, tales they have to repeat multiple times to a nurse or physician’s aide as well as to the doctor. How their story gets documented is out of their control.
Given that every good relationship has two sides, patients need to show up differently too. Patients need to embrace the fact that they live in a world of stories; information isn’t shared in a vacuum. Stories are how you communicate everything from your coffee order to what you did over the weekend to how you handled a work drama. You need to be able to tell your provider your story in a succinct yet compelling manner, including how this health issue makes you feel, and still be able to answer as many of the health-care provider’s questions as possible
But how? How can you get over white coat syndrome? How do you not go blank? How do you deal with being cut off?
First, I tell people to put together a “medical résumé.” (You can get a free copy at my website.) The medical résumé lists your pertinent biographical information, as well as medical diagnoses, treatments, hospitalizations, and their dates. It shows all your current and old medications and other information about your health you think is important for a health-care provider to know. You don’t want to be asked by the clinician about a symptom (e.g., when did the abdominal pain start?) and not be able to respond. It’s your body, so you know it best, and your medical résumé puts that important knowledge on paper. Remember that you’re looking to establish a relationship with your clinician. The best way to do this is to show that you know your medical story and symptoms. This step will help the clinician with both attention and representation.
Next, write down questions and issues you don’t want to forget to ask. If you don’t write down your questions and concerns that you want to discuss with your doctor, you run the risk of not remembering them until you leave your appointment. If you already have a relationship with this clinician, you can share your résumé and communicate with them through the patient portal, which most hospitals and health clinics have. Take advantage of them if you have a device that lets you, and don’t hesitate to ask someone to help you get connected, including medical office staff.
Finally, rehearse what you’re going to say to the clinician. The adage that “practice makes perfect” applies here. This part is very important, because a recent study showed that on average, doctors give patients just 11 seconds before interrupting them. However, patients who were not interrupted completed their opening statements within about six additional seconds. If we have such a short window of time to describe what brought us to see the doctor, it’s imperative that we tell our authentic health story. Rehearsing it allows you to tell it in a concise yet compelling manner.
As you consider what you’re going to put in your story, think about both your symptoms and how this health problem has impacted your life. What does the symptom feel like? When did it start? What makes it worse? And what makes it better? Have you experienced this before? If so, when? As far as the impact, what are you unable to do? What do you need the health-care provider to help you with so you can return to health?
If the provider continues to interrupt you, don’t get flustered; tell them that you still have something to share or questions to ask. You need to feel comfortable bringing up your concerns, questions, and feelings with your clinician. As Rita Charon explains, “When others challenge us that no doctor or nurse or social worker has the time today to listen in the way that we describe, we often ask if we have the time not to.”
Once the health-care provider has come up with a plan of action or possible diagnosis, don’t be shy about asking questions of them and getting clarification. When you’re asking follow-up questions, it’s a good time to ask anything you might have been remiss in bringing up earlier. And listen carefully to what the health-care provider actually tells you, even if it’s news you didn’t want to receive.
These three steps can help you take ownership of your health and create an affiliation with your clinician—a partnership that hopefully will lead to improved health.
About the Program
Columbia University’s Certification of Professional Achievement and Master of Science in Narrative Medicine prepare health professionals, writers, and scholars to apply the skills and values of narrative understanding to improve outcomes for both patients and caregivers. The program offers a rigorous and in-depth study of close reading of creative texts, illness and disability narratives, narrative ethics, philosophy, creative writing, and other perspectives.
Fall 2023 application deadlines for the Narrative Medicine program are March 15 for applicants with international documents and June 15 for the final deadline. Learn more here.