Something Special Happens When We Share Stories About Our Patients

Laya Jalilian-Khave, MD
Laya Jalilian-Khave, MD
8 Min Read

Jalilian-Khave is a general physician and a postdoctoral psychiatry fellow.

I was a 25-year-old physician on my first posting in an impoverished rural area of Iran. Every day brought a new challenge, a new difficulty, a new horror, a new joy — a new story. Stories I began to write down.

In the beginning, I was just writing for myself, a survival mechanism I had developed to make sense of it all and help — well, really to try to force — time to pass. When I felt like I couldn’t take it anymore, I would close my eyes and think, at least I will write about this: the patient complaining of abdominal pain when he ate something new after surviving on dry bread for days; the fight with a family about their unwillingness to admit their 8-year-old to be evaluated for meningitis because it was expensive; the mother who came in with dangerously high blood pressure after her 18-year-old son died the previous day in the same hospital. There were no other hospitals nearby, and the walls reminded her of her son. Her blood pressure wouldn’t come down.

Gradually, I began to want to share the stories I witnessed, if only to get them out of my head.

I started writing after every shift, details I had kept — or couldn’t keep — to myself, and before I knew it, I was dragged far deeper into my patients’ worlds than I ever knew I could be. Only then did I come to understand my patients’ pain below the surface — and the life that made the pain bearable. I started writing about my pediatric patients’ jokes; how the elders called me “Auntie” when I looked sad; how couples laughed or cried when I told them their pregnancy results; how young patients’ tummies hurt after a big feast in New Year’s gatherings; and how they tried to sweet-talk their way out of receiving necessary shots.

As Frederick Mayer notes in Narrative Politics: Stories and Collective Action, “We use stories to make sense of our experience and to imbue it with meaning. Our self-narratives define our sense of identity and script our actions. Because we are constituted by narrative, we can be moved by the stories others tell us.” I wanted to share my stories, and my only social media profile was on Instagram, followed mostly by friends and family. While the platform is ranked among the worst social media platforms for mental health, it became a form of a ritual, a healing space — for me and, via my posts, for others.

Friends started following the stories, then friends of friends, and it grew in popularity: “Tell us more.”

The village I was working in was in a northeast region of Iran known for its extreme poverty more than anything else, and many of my followers told me it was their first time hearing details about the life of the people in that region. A shift would pass, and people remained worried about a case I had described: “Did he get to surgery in time?” People I hadn’t talked to for nearly a decade and people I had never spoken to before reached out when I was on my time off: “Hope you have a great rest! When are you going back, though?”

There were so many stories of patients rejecting prescriptions or much-needed stays in the hospital because of the cost. Followers kept asking me, “Then what did you do?” and I began to feel compelled to have a better answer than, “I let them go.”

So I turned to that community — to the people who were asking the questions — and began to accept regular donations online on behalf of my patients. It worked this way: There was only one main pharmacy in the village, and when a doctor confirmed that a patient couldn’t afford their medication, the pharmacy would give them the medication for free. At the end of the month, the pharmacy would send me the receipts for what they had given away and we’d transfer the donations to the pharmacy to cover the cost.

I continued to share stories for the remainder of the time I worked at that hospital until the day I left 2 years ago — and to this day, donations are still coming into the informal charity from my concerned friends and followers.

A comment from one of my followers — a man I didn’t even know in real life — taught me one of the biggest lessons about narrative.

“You want to know why I like this [donation] box? You once mentioned a man who seemed to have forgotten to rub off a red lipstick mark on his neck before coming into the hospital…it made me laugh so hard about one similar incident I just had with my girlfriend here in Tehran! That one really caught me. I wanted that man and people like him to feel better!”

This made me think: Were strangers compelled to donate by the stories of pain or the stories of life? Or perhaps the possibility of hope, despite the pain my patients were going through?

A narrative about a traumatic event or condition, specifically the ones with a chronic or ongoing nature, should incorporate details and paint pictures, as if every person in the story could be our parents, children, brothers, sisters, and neighbors. It needs to hit close to home. Only through this personalization process did the people out there on the internet start to care about my patients.

I was lucky enough to help those people get better and to live closely with them for a while. But I wasn’t alone; many joined me in this journey. Through the endless stream of chats and images on Instagram, our lives and destinies had become linked. Our small community had begun to care and kept caring, making a small difference where we could.

Laya Jalilian-Khave, MD, is a general physician from Iran, a postdoctoral fellow in the Department of Psychiatry at Yale School of Medicine, and a public voices fellow of the OpEd Project.

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