Medical knowledge is not enough without medical narratives

I had a brain SPECT scan a few months ago, which involved lying completely still while rotating panels took pictures of radioactive tracers in my brain to determine how much blood was flowing to different regions. Afterwards, doctors compared my results to the images of other brains. Columbia Presbyterian, where I had my procedure and where the SPECT scan was pioneered, has the largest library of brain images to which my results could be compared. It’s important, my doctor explained, to have a large library of images. “Otherwise,” he said, “They’ll only compare your scan to stroke patients and say, ‘I guess your scan looks fine.’ They won’t understand. And we won’t know how to respond.”…

Two years ago, after my bloodwork came back positive for Lyme, I told my doctor my brain felt fuzzy (what did I even mean by that? Fuzzy like what — a peach? A blurry photo?). “Yes,” she responded. “Lots of patients with Lyme call it a brain fog.” This was before I knew about the Lyme spirochetes that had invaded the endothelial cells lining the blood vessels in my brain. “Brain fog,” I repeated. “That’s it.” Then I cried because being understood and believed — after so many misdiagnoses — was nothing short of a miracle.

I often wonder if the trauma of all my misdiagnoses and months of invasive treatments could have been avoided if the first doctors I saw had more patient narratives to which they could compare my experiences, more data points in their model…

I, too, told multiple doctors in the beginning that sudden noises made me break into tears. While I insisted I wasn’t generally unhappy or upset at all, they seemed intent on a psychological diagnosis. One night, I was actually crying to my father out of frustration, resigned to finally make an appointment with a psychiatrist, though I knew in my gut that was the wrong move. “Has anyone done a blood test yet?” he asked. “Like for mono or Lyme?” He trailed off, but the next morning, I called a new general practitioner and asked her to do a blood test for everything she could think of before my appointment. She agreed, and that’s how I was diagnosed. Because my dad, a lawyer, asked if anyone had done a blood test…

An infectious disease specialist told me I was having trouble reading because I was tired. The SPECT scan would much later reveal I was actually having trouble reading because I had inflammation in my brain.

I told another doctor that after I closed a book I had no recollection of it: the plot, the characters, the author. She waved her hand dismissively and told me she had the same problem. “In 2015, I read 250 books,” I said, trying to keep a measured tone, “In 2016, I read three.”

She told me that happens to all of us eventually.

“But I’m only 25,” I insisted, staring dumbfounded at the gray-haired woman across from me.

A few weeks later, when that doctor sent me an email suggesting I try yoga (my case apparently didn’t even merit a phone call), I couldn’t help but wonder what I had done wrong. My brothers urged me to forget about the doctors who didn’t listen. But the problem was that she had listened.

Many of these doctors — heads of departments at top New York hospitals — spent hours listening to me, and they still dismissed my symptoms as fatigue or depression or psychosomatic pain. I felt — and still feel to this day — that it’s somehow my fault that so many medical professionals didn’t take me seriously, despite what I told them and, later, despite the bloodwork, scans, and neuropsych testing that pointed toward serious issues with my brain. If I had been clearer, conveyed the urgency of my symptoms in a more compelling way, I would have been diagnosed sooner and maybe this whole thing would have been treated with three weeks of antibiotics before any real damage was done…

The infectious disease specialist who ultimately treated me was a doctor who has seen Lyme patients for decades. He started most appointments with, “I once had a patient…” He’d seen just about everything; this is how I came to trust him. The most comforting words he ever said to me were at our first appointment: “I’ve treated so many patients just like you.” While each patient is different, in the absence of research and scientific consensus, the stories he carried from his previous patients helped him direct my treatment course. Doctors often warn Lyme patients not to conflate evidence with anecdote — rightly so — but for a disease so under-researched we don’t even have a way to test if a patient is still infected, perhaps we should give more weight to the collective anecdotes of patients. When it comes to this disease, sometimes they’re all we have.

https://electricliterature.com/medical-knowledge-is-not-enough-without-medical-narratives-613c22b54f9b

Courtesy of Doximity