Friday 11 January 2019

Medical knowledge is not enough without medical narratives

Why illness memoirs like Porochista Khakpour’s “Sick” are so important to patients like me, says Shoshana Akabas in Electric Lit. Read on: 

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.”

Siddhartha Mukherjee, in his Pulitzer-Prize winning book, The Emperor of All Maladies, quotes oncologist Howard Skipper: “A model is a lie that helps you see the truth.” This is how my doctor explained the SPECT scan library to me. The more sophisticated the interpretive model, the more data points it contains, the more likely we’ll find the truth. In my case, what we found out was what we already knew: the lack of blood flow in my brain isn’t as severe as a stroke patient’s, but it is way more severe than a healthy person, and about the same as most other patients with Central Nervous System Lyme disease. In comparison with the vast range of brain data available at Columbia Presbyterian, I was better than I could be, but I was not fine.

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 often wonder if the trauma of all my misdiagnoses could have been avoided if the first doctors I saw had more patient narratives to which they could compare my experiences.
But there were many instances where the common language of Lyme patients was alienating. Hearing other people’s Lyme stories has always been hard for me, because I’m envious of those who were correctly diagnosed the first time (usually men, whose complaints of achiness and fatigue had been taken more seriously than mine) and wary of those who have been sick for so long that they’ve moved beyond traditional treatments. At first, I didn’t want to believe my medication could fail and I worried patient’s departure from doctor-recommended treatments would only widen the growing chasm between patients and medical professionals, who are supposed to be partners. Now I avoided talking to other patients because it’s difficult for me to hear someone’s experience of Lyme — with which I am supposed to empathize — only to have it sound foreign.

So I put off reading my reviewer’s copy of Porochista Khakpour’s memoir, Sick, for most of the winter — but once I started, I found the points of commonality were validation I didn’t realize I needed. Much of my story parallels Khakpour’s: a wrongful diagnosis of depression; Klonopin; Neurontin; cognitive symptoms to match the crippling physical aches; living alone outside the U.S., with no idea what was happening inside my own body; juggling opinions of dozens of specialists; reacting to the initial diagnosis of Lyme with ignorant relief. As Khakpour described each of these trials with poetic clarity, they became for me rare moments of connection that can only result from a shared language, a shared story.

“The deal with so many chronic illnesses,” Khakpour writes, “is that most people won’t want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything will be okay.”

As Khakpour described each of these trials with poetic clarity, they became for me rare moments of connection that can only result from a shared language, a shared story.
I hear these lines all the time, and I’ve learned to politely smile and thank people for their kind words. But while it’s helpful to know that I can pass for normal, hearing that I seem fine when I’m painfully aware every second of every day how my brain is malfunctioning creates a chasm between what others see and what I know to be true. It makes me feel very lonely in my under-oxygenated brain.

I know people say these things because they want them to be true (you seem better) or to sound encouraging (you’ve accomplished so much despite being sick), but it makes me feel like they don’t believe how bad it is. Which makes me distrust myself — just like the many doctor appointments, where people I was supposed to trust told me I was depressed, told me I just needed to toughen up, when what I really needed was antibiotics.

This disconnect between those who have experienced this weird disease and the rest of the population is at the core of Khakpour’s memoir. One of the most moving sections of Sick is when Khakpour describes interacting with her boyfriend’s mother — her first real encounter with someone suffering from Lyme. “It was hard to listen to her stories of the constant ups and downs and think that this had just come from a tick bite,” Khakpour writes, recounting the symptoms that she wouldn’t experience first-hand until years later, and describing her disbelief that no doctors could help her boyfriend’s mother. “I’d try very hard to recall my coldness to her over a decade later, my inability to channel full empathy, my distance from whatever it was that was happening to her that I felt so far away from, so I could understand better when it all got turned around on me.”

Part of this disconnect stems from the fact that Lyme is bizarre, and pain has a limited vocabulary. This makes narratives around illness difficult to construct. As author John Green writes, “We’re such language-based creatures that to some extent we cannot know what we cannot name. And so we assume it isn’t real. We refer to it with catch-all terms, like crazy or chronic pain, terms that both ostracize and minimize. The term chronic pain captures nothing of the grinding, constant, ceaseless, inescapable hurt. And the term crazy arrives at us with none of the terror and worry you live with.”

Making this physical-emotional pain comprehensible to someone who has never gone through it is an immense challenge, even for a writer. I’ve developed a million analogies: my eyes hurt like I’ve been staring at the sun for hours; sometimes English words sound like a foreign language; my head has pressure on both sides like the walls of the garbage chute closing in during Star Wars Episode IV; my muscles feel like rubber bands being pulled to the end of their elasticity; I hear sounds no one else hears like a new mother hears phantom cries from her sleeping baby. None of these are accurate, but they’re the best I can do.

And sometimes I can’t even do that. In addition to descriptors of pain being remarkably absent from our vocabulary, sometimes the inflammation in my left frontal lobe makes even the words we do have evaporate on my lips.

Ultimately, it comes down to this: People don’t want to believe something so awful, and I often find myself lacking the vocabulary and the mental acuity to make them understand.

Khakpour writes, “The hardest thing for me with those breakdowns was losing the one thing that made me happy: the ability to write. I could not form sentences, my imagination seemed crippled, plot and characters seemed so abstract, theme an impossibility, all syntax and diction just puzzles that were unthinkable to piece together.” For someone whose primary mode of thought and reflection is writing, the cruel irony of Lyme is that the symptoms of this disease leave writers unable to process the trauma of it.

The cruel irony of Lyme is that the symptoms of this disease leave writers unable to process the trauma of it.
I remember sitting in my professor’s office on the verge of tears. “What if I never write again?” I asked. Teaching English at Columbia, translating, writing fiction — all these things relied on my ability to conjure words. She shook her head, not unkindly, and gave me a list of writers with Lyme, one of whom was Porochista Khakpour. “Only to say,” my professor told me, “that it can be done, that you have something to offer.”

Sick offers validation and a greater capacity for understanding this illness among those who experience or encounter it. But this book has an even more urgent mission, encapsulated in Khakpour’s long descriptions of the process of reaching the Lyme diagnosis:

[The doctor] was convinced I had depression… I tried out antidepressants with names like sci-fi wizard goddesses, Paxil and Celexa… I tried acupuncture, I tried an ayurvedic center, I tried multiple healers, I tried nutritionists. At one point I was seeing three different sleep specialists who all seemed fairly invested in hiding how stumped they felt. I think something is wrong with me physically, I caught myself saying again and again.
The common thread among all the late-stage Lyme patients I’ve spoken to has been this: I tried to tell doctors, and they thought I was crazy.

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.

“Pain without cause is a pain we can’t trust. We assume it’s been chosen or fabricated,” writes Leslie Jamison in The Empathy Exams. But understanding someone’s pain, separate from the source of their pain, is something that all of us — not just medical professionals — struggle with. I don’t fault doctors for not making me better — Lyme is complicated and manifests differently from patient to patient, and there’s shockingly little research and consensus on courses of treatment. I fault the doctors who didn’t seem to try. 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 don’t fault doctors for not making me better. I fault the doctors who didn’t seem to try.
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.

Khakpour writes, “It amazed me that even after all these years… I could still be in this position — helpless, crazy-seeming, confusing, inconvenient, out of their norm, a problem.” Unfortunately, mental illness is often the go-to diagnosis for doctors who don’t recognize the symptoms of late-stage Lyme: “Women suffer the most from Lyme. They tend to advance into chronic and late-stage forms of the illness most because they are diagnosed the latest, as doctors often treat them as psychiatric cases first. The nebulous symptoms plus the fracturing of articulacy and cognitive fog can cause any Lyme patient to simply appear mentally ill.” Ironically, Khakpour points out, prolonged misdiagnoses can cause considerable psychological trauma.

The Center for Disease Control estimates 300,000 new cases of Lyme each year in the U.S., more than hepatitis, breast cancer, and HIV combined. So how did so many doctors miss my diagnosis? Fail to even think my symptoms warranted a blood test?

As someone who tells stories for a living, I can’t help but wonder: why wasn’t I able to tell my own story well enough to make doctors listen?

“A model is a lie that helps you see the truth.”

I keep coming back to this.

Words are limited. Anything we write will be a sliver of the lived experience. There is no one experience of Lyme — or any disease — and it seems any narrative will inevitably ring false to both the person who endured it and to others who are supposed to relate.

It seems discouraging that a medical narrative will almost inevitably feel insufficient to those who experienced it, unrepresentative to other patients, and inaccurate to the rest of the world. Yet Sick has helped me realize the immense benefits of medical narratives: They can help the medical community see where our understanding is lacking. They can help those who have never experienced chronic illness “exercise the muscle of empathy” as writer Etgar Keret puts it; and they can help people like me feel a little less lonely with my brain.

“Sick” has helped me realize the immense benefits of medical narratives: They can help the medical community see where our understanding is lacking.
Each narrative provides a larger model for all of us — patients, friends, doctors — to use, and Porochista Khakpour’s book adds to our database in an area that is sorely lacking. Her honesty about other traumas, from drug addiction to being a political refugee, provide layers of complexity that drive home the point that each case of Lyme is a distinct person and must be treated as such. As Leslie Jamison writes, “Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see.” I often think of all the people with Lyme who don’t have the resources, access, finances, or time to persevere beyond the third, fourth, fifth wrongful diagnosis or doctor who simply tells them to get more sleep.

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.

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.
Which is why having Khakpour’s narrative (and more like hers) in our collective awareness may be a matter of health or crippling illness for hundreds of thousands of people.

Being a writer with Lyme is a double-edged sword — it creates the need to share experiences, so people like me can feel less alone, so friends and family can understand, so doctors can treat patients more completely, a mission that is confounded by the Lyme itself and the cognitive havoc it wreaks. So I thank Porochista Khakpour for doing what I know to be both impossible and necessary: telling her story.

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