“In telling this story, it occurred to me that it wasn’t character or plot or even theme that was the ruling principle of its composition, but something far less likely: setting…The question of where would be the most mysterious of all.”
So reflects Porochista Khakpour in her memoir, Sick (2018), which chronicles the author’s difficult journey to identify the illness that plagues her and the wrongness that she’s always felt within her own body.
After years of rapidly declining health, a slew of doctor appointments, misdiagnosis, skeptical medical professionals, and thousands of dollars spent on inconclusive tests and addictive prescription drugs, Khakpour was diagnosed with late-stage Lyme disease in 2011. Lyme disease is a tick-borne bacterial infection that can usually be treated easily with antibiotics if detected early. But if undiagnosed and untreated, it can mutate into chronic Lyme with symptoms including convulsive fits, incurable insomnia, cognitive malfunction, chronic fatigue, and motor dysfunction. Relapse is almost always guaranteed for those with chronic Lyme.
Though difficult, the physical symptoms are not the hardest part for Khakpour. The real struggle is the lack of concrete “knowns.” Sick explores this theme, narrating her journey “to pinpoint this disease, to define it, (which) in and of itself is something of a labor already.” More broadly, Sick is about seeking home within a place, within a diagnosis, and within her own body.
Born in Tehran in 1978, Khakpour was a child of the Islamic Revolution and the Iran-Iraq war. Her family escaped to America as political refugees when she was five. When they arrived in “Tehrangeles,” an enclave in the West Side of Los Angeles home to wealthy Iranians, her father insisted that their geographical condition was temporary: “This isn’t your home… We’ll be home again one day soon.” Khakpour recalls, “He said that for three decades.”
The memoir conveys a sense of dislocation, rootlessness, and perpetual journeying as Khakpour moves from place to place: L.A., New York, Santa Fe, Pennsylvania, Germany, and L.A. and New York again. Every episode charts her potential exposure to ticks: hikes in L.A. as a child, long weekends at the Hamptons, holidays in Mexico, writing residencies with high Lyme risk, and living in Leipzig with toxic mold. Khakpour initially accepts the wrongness she feels within her body as a product of her “otherness”—being a foreigner, an immigrant, a refugee. She later wonders, “Was displacement of the body literally causing a feeling of displacement in the body?”
Medical professionals insist that her illness is only psychological, which causes her to ignore the truths expressed by her body. Each year, an estimated 300,000 people are diagnosed with Lyme in America. Yet, there is still a lack of concrete data about the disease, and many individuals who have Lyme go undiagnosed. The commonly used ELISA (enzyme-linked immunosorbent assay) screening test is unreliable, as it misses 35% of culture-proven Lyme. As a result, sufferers are often met with derision. While she is waiting to be admitted into a psychiatric ward, nurses repeatedly tell Khakpour: “Nothing is wrong with you physically, you need to understand that.” Khakpour ponders this gendered response to diseases such as Lyme, which include cognitive malfunction and lead doctors to treating women as neurotic. She realizes that “women simply aren’t allowed to be physically sick until they are mentally sick.”
Is it any surprise that Khakpour’s relapses almost always coincide with global turmoil— the Paris attacks, Trump’s election, the Muslim ban?
She herself becomes increasingly aware of the inextricable link between the mind and the body, and of the impact of her childhood displacement and trauma on both. Having left her volatile country and entering America as an “outsider” and “alien,” she wonders if she would have been less sick if she had a home. It makes sense, she suggests, that PTSD can trigger relapses or the resurfacing of disability and illness. At the same time, being misdiagnosed and (willfully) undiagnosed can be the cause of considerable trauma. Is it any surprise, then, that her relapses “almost always coincide with global turmoil”– the Paris attacks, Trump’s election, the Muslim ban? In one instance, Khakpour cannot imagine being off antibiotics as the trauma of her childhood is invoked by the news and the heightened bigotry after Trump’s election.
Even in her most ill state, Khakpour knows to anticipate acts of racism. For instance, when she experiences a sudden fit, losing consciousness and foaming from the mouth, she pleads with a black paramedic: “Please don’t take me somewhere where they are racists.” On a cab to the hospital, her body convulsing, she screams to her mother in “agitated Farsi” before pausing to placate the driver: “Excuse me, sir, just so you know, it’s Farsi. I’m Iranian, but not one of the bad people, please don’t be worried.” Khakpour also remembers a ride home in a tow truck after an accident that gave her a severe concussion: “I was so focused on not letting him hurl anything racist at me I barely remembered the accident.” The threat of violence is constant, made more frightening by her vulnerable state of being.
In college, Khakpour constructed her own identity to pass as white. She recalls buying a carton of Marlboro Reds and smoking a quarter pack to become addicted, consciously becoming the girl with “neo-Malcolm X glasses” who subsisted on “coffee and cigarettes and bagels,” dabbled in drugs, and explored her sexuality. The epitome of “heroin chic,” she dated a line of white men. Many of these and later relationships met turbulent ends.
But as an adult, she becomes disturbed by the ways in which her illness is interpreted as a racially charged badge of honor: “I’m a brown Middle Eastern woman, though every time illness turns me white—thin and pale to the point where everyone congratulates me at my sickest as I transform to a white woman in appearance…” Khakpour recently told Guernica that her use of a cane, wheelchair, and oxygen give her a “pass into the world of white people,” and her “flying-while-Muslim issue” is temporarily shelved. In this interview and the memoir, Khakpour asks readers to consider what it means that her illness-induced identity ultimately grants her entry into the white establishment.
Lyme is often considered a white person’s disease because Lyme-heavy areas, such as Connecticut or upstate New York, are home to affluent white people. In some ways, Lyme is an affluent white person’s disease, as the cost of treating late-stage Lyme prohibits many others from receiving proper care. (Experts estimate that it costs between $20,000 and $200,000 annually to treat late-stage Lyme disease.) Khakpour understands these burdens all too well. After a car accident, she is faced with the possibility of relapse. Reflecting on this experience, she writes, “in too many ways, I could not afford this reality.”
In America, wellness is the domain of the wealthy. Upon writing, Khakpour had spent $140,000 on her disease. There is currently a fundraiser for further treatment. She discusses how the healthcare system has become even worse under the Trump administration, whose policy “serves a very small, elite, Aryan nation subset of the population.” But she expresses hope that “more and more Americans are realizing they’re being excluded.”
In the book’s Acknowledgements, Khakpour thanks the many sick people who urged her to write her memoir, “especially women of color who told her (they) needed this narrative.” The lack of representation among these groups was a key reason for her writing. As she related in The New York Times, “There weren’t a lot of people like myself—a woman of color, a woman of Muslim culture, an Iranian— who had told this story.”
Despite this, or perhaps because of this, there is no naivete or false promise in Khakpour’s memoir. Sick is neither a wellness bible nor a triumphant illness-to-recovery story. There are instances of gripping hope for diagnosis, and when that diagnosis finally arrives, of treatment and recovery. “My body was wrong, and through data, we could prove that,” Khakpour writes. Yet, she is clear she is not a “good” patient (she lapses to previous drug addictions); and while she offers multiple origins for her disease, her drive to locate such a point is supplanted by the greater truth that she will never know the origin. The memoir ends with Khakpour suffering from another terrifying relapse.
Though there is no happily-ever-after, Sick suggests the power of imagination as an act of survival: “I imagined myself… hiking into those amber mountains in Santa Fe… stepping out of a cab in Manhattan… falling asleep to the sounds of Muslim prayer… writing, reading… holding (this) book… if only to feel my heart beat against it.” Such imaginative acts are also powerful for Khakpour’s readers. This memoir validates everyone suffering with late-stage Lyme, women whose pain is constantly dismissed, and, importantly, women of color who rarely see their experiences reflected in these literary spaces.