By Nelly Edmondson
Edmondson, a Mindworks member who holds an MS in Narrative Medicine from Columbia University, is a veteran health writer and editor, a narrative medicine specialist, and an expressive writing and art-journaling workshop facilitator. Here, she explores how a narrative medicine-informed advocate can be a game-changing asset for patients and providers.
A Diagnosis That Changes Everything
My friend Joanna’s symptoms came on gradually. Bouts of dizziness, trouble finding words. Weird, involuntary eye movements and persistent fatigue. Over the course of several months, she consulted various doctors and eye specialists and underwent multiple tests.
During this time, I didn’t see much of Joanna, although we texted and spoke on the phone, and she didn’t say much about what she was going through; only that she was “having some minor health problems.”
Finally, she got a diagnosis: Progressive supranuclear palsy (PSP), a rare, neurodegenerative disorder like -- but faster-progressing than – Parkinson’s disease. PSP causes the deterioration and death of tissues in the brain.
Joanna and I have been friends for more than 40 years, sharing milestones – birthdays, weddings, parenting and work struggles. But PSP was different – a dark and frightening cloud hanging over us both.
Like many patients confronting a scary diagnosis, Joanna’s initial reaction was shock, followed by a desire to know more. However, she had little idea how to research medical issues or assert herself diplomatically with doctors—things I had learned from my work as a medical writer and editor. In situations like this, doctor visits often end, leaving patients’ questions unasked or unanswered and causing confusion about what should happen next.
An Unmet Need: Advocacy in the Exam Room
Friends and partners can offer moral support, of course, but it occurred to me that Joanna’s situation pointed to an often-unmet need: in-person advocacy during the patient-doctor visit. As a graduate of Columbia University’s Master's in Narrative Medicine program, I thought I could provide such help. In addition to learning deep reading and listening skills, many Narrative Medicine specialists have had intimate contact with the healthcare system, either as patients, caregivers or both.
I asked Joanna if she would like me to accompany her on some of her doctor visits. She said yes. In the following days, I spent hours online studying medical websites, including those of the Mayo Clinic, the National Institute of Neurological Disorders and the disease’s dedicated website: CURE PSP. I learned that PSP is a “tauopathy,” caused by a buildup of abnormal, sticky proteins in the brain. I also learned that there is no cure for PSP, but there are ways to treat its symptoms and even reduce tau levels in the brain. I also learned that research and clinical trials for PSP are underway, which made the situation slightly less daunting.
Here were some of Joanna’s questions:
- What can I take to relieve anxiety? I am already on Wellbutrin and Celexa. Are these appropriate?
- My general practitioner suggested I take lithium tablets. Could they help?
- What about physical therapy, speech therapy, and exercise?
- What things should I avoid – flying? Novocain?
- How can I find a support group?
I helped Joanna tweak and finalize her list, and by the day of her appointment, we were ready.
Putting Narrative Medicine into Practice
In September 2025, I met her at Dr. K’s office, where she introduced me as a friend who was there to serve as a second set of ears and take notes.
Dr. K, a general neurologist, was knowledgeable and friendly. Like many physicians, she let her patient take the lead. Indeed, letting patients lead in asking questions is a key aspect of patient-centered care. This helps ensure that care including the timing and type of information given – is tailored to an individual’s preferences, needs, and values.
When asked specific questions, Dr. K. had plenty of advice: Follow a brain-healthy diet that emphasizes leafy greens, vegetables, fruit, whole grains, beans, fish, poultry, nuts, and olive oil. Aim for at least 30 minutes of moderately vigorous aerobic exercise three to four days a week. Engage in activities that challenge the brain, such as reading, playing board games, or learning a new language. Avoid smoking, limit or avoid alcohol, and continue to socialize regularly with friends and family.
In addition to making sure all our questions were answered, and gently interjecting when I felt more information was needed, I was able to bring up issues Joanna was embarrassed to mention, such as her “frozen bowels.”
“I understand some PSP patients experience severe constipation,” I said lightly. “Is that a common problem?”
Dr. K said that yes, it was, and mentioned a prescription medication that might help.
“So,” I said as we neared the end of Joanna’s appointment, “what do you see as Joanna’s next steps?”
Dr. K. explained that going forward, Joanna would be seeing two physicians: herself and Dr. F., a neurologist colleague who specialized in movement and coordination problems.
Several weeks after the appointment with Dr. K, I accompanied Joanna to an appointment with Dr. F. Before the visit, we went through the same process. I did research and drew up a list of questions about PSP-related movement challenges, and Joanna put together questions about how to manage her current and possible future symptoms, which prompted Dr. F to ask what kind of support Joanna had at home.
I could tell by the way the doctors met my gaze and encouraged me to speak that both found my participation useful – Dr. K. even said to Joanna, “I like Nelly.” After each visit, Joanna said she was glad I had come, and I resolved to accompany her on as many future visits as I could.
A Model for In-Person Advocacy
Moving forward with the idea of in-person advocacy, here is what I envision: Patients and in-person advocates would be matched by the hospital, physician, or other organization treating the patient. The advocate would meet with the patient in advance of an appointment, in person or online, to learn about the patient's situation and specific concerns. The idea would be “marketed” as a way to save doctors' time when meeting with patients. The advocate would then research the patient's disease and, with the patient's input, develop a solid list of disease-related questions for the medical professional. The advocate would then accompany the patient to the visit (along with a partner/friend if desired), take notes, and ensure that all questions are answered and that there is agreement on next steps. Finally, the advocate would type up their notes from the medical encounter and send them to the physician, the patient, and any other interested parties.
What do you think?
Readers, have you ever provided ‘in-person advocacy’ to a friend or family member facing a serious illness? If so, how did it go? Also, do you think this could be done in partnership with narrative medicine specialists, medical professionals, or health-care organizations? If so, we would like to hear about it. Respond directly to this blog or send your responses to
