In the opening pages of her memoir Sick (2018), Porochista Khakpour tells readers that even though she has lived with Lyme for most of her life, her knowledge of the disease is full of gaps. "It is unlikely I will ever know when I contracted [Lyme]," she writes, "just as it is unlikely I will ever be rid of it entirely" (3). Testing for Lyme is unreliable. There is also no way to prove that one has been cured of the disease. As such, doctors frequently regard Lyme with skepticism. In Khakpour's words, the disease is seen as one "of hypochondriacs and alarmists and rich people who have the money and time to go chasing obscure diagnoses" (21). Because of this lack of clinical, social, and cultural support, Khakpour experiences Lyme as a vast unknown. She firmly believes that something is wrong with her body, but she is forced to question whether the symptoms she experiences are psychological, physical in nature, or something else altogether.
Published this year after much critical anticipation, Sick charts Khakpour's circuitous and at times maddening path to receiving a diagnosis of late-stage Lyme. Readers of Sick follow Khakpour as she repeatedly seeks help from the medical establishment but comes up empty handed again and again. It isn't until the last pages of the memoir that she is finally given a diagnosis. Upon receiving it, Khakpour begins crying and asks the doctor to repeat himself – just in case she misheard.
Sick proves that life writing continues to be a meaningful literary genre for chronically ill and disabled authors. As G. Thomas Couser explains in Signifying Bodies: Disability in Contemporary Life Writing (2009), autobiographical writing by disabled authors frequently offers a "retort…to the traditional misrepresentation of disability in Western culture" (7). But while other illness narratives, like Audre Lorde's The Cancer Journals (1980) or Lucy Grealy's Autobiography of a Face (1994), present little doubt that the illness in question is real, Sick doesn't provide much in the way of certainty. Khakpour experiences painful symptoms, including chronic insomnia, panic attacks, rapid weight loss, tremors, and fainting, but neither she nor doctors know what causes them. Doctors offer guesses: it could be black mold, Bipolar II, thyroiditis, or maybe polycystic ovary syndrome. Or it could be nothing at all. One doctor tells her "I don't really think there is anything wrong with you physically" (111). Sick makes readers feel the visceral frustration that Khakpour endures because of these many unknowns, but it also asks us to question the utility of diagnostic certainty. At one point, Khakpour visits an acupuncturist who asks her, in reference to the mysterious disease: "Does it need a name?" (122). Khakpour instinctually insists that, yes, her illness needs to be named. But then she reevaluates. A diagnosis would only lead her to "more doctors, more pills, more money, [and] more roller coasting through the medical system" (122). Readers must wonder if that would be a better alternative.
The serpentine path that Khakpour takes to a diagnosis mirrors her own travels across the globe. Khakpour was born in Tehran, but while she was still young her family fled the Iranian revolution and came to the United States. She grew up in Los Angeles, just outside of "Tehrangeles" – the segment of west Los Angeles that became home to many Iranian refugees after 1979. She later attended Sarah Lawrence College near New York City, but her work as a college writing instructor and her search for treatment options brought her to New Mexico, Germany, rural Pennsylvania, and many places in between. Sick is as much a story about place and geopolitical turmoil as it is about illness. Khakpour notices, for instance, that her Lyme symptoms worsen in moments of political upheaval, such as the 2016 election of Donald Trump to the United States presidency or the aftermath of the 2015 Paris attacks. Having to constantly grapple with racism only worsens Khakpour's symptoms. In a passage early in the memoir, Khakpour must rush to a hospital for a medical evaluation. However, the person driving her there unleashes a torrent of anti-Muslim hostility. In this moment, her pressing health needs fade away as she strategically tries to defuse the man's racism. His xenophobia worsens her brain fog, and she finds herself "numb" (20), dizzy, and disoriented. Sick shows us that disability studies must be in dialogue with critical race and post-colonial scholarship to do its job adequately. Though there is increasing recognition of the importance of examining race and disability together, as evidenced by recent monographs such as Sami Schalk's Bodyminds Reimagined (2018) and Julie Minich's Accessible Citizenships (2013), race, ethnicity, and nationality still remain understudied areas in disability scholarship.
Another strength of the memoir lies its depiction of chronic illness as a deeply gendered phenomenon. Khakpour learns from firsthand experience that because Lyme can include disorientation and brain fog, doctors frequently assume that women with Lyme are mentally ill and not physically sick. Doctors regularly disbelieve women – especially women of color – who claim to be in pain and write off women's suffering as mere malingering. As such, there are indications that women face late-stage and chronic Lyme with more frequency than men and that women die of Lyme more readily. Lyme is connected with mental illness for multiple reasons, though. "In the end," Khakpour reveals, "every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis" (166). Such an insight suggests that mental disability is always interwoven with physical disability and impairment.
Sick would be of value to readers interested in disability, women's and gender, and critical race and ethnicity studies. The book embeds powerful insights into these fields of study within an emotionally dense narrative. It is raw and unflinching. While reading it, I felt like I was wandering around in a fog with Khakpour. The narrative offers no answers, no firm solutions. But by presenting readers with a central mystery, the memoir asks us to solve it. We learn that it is our responsibility to find better ways of supporting Lyme sufferers, to believe their stories, and to shed light on the much-overlooked illness with which they live.
- Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009. https://doi.org/10.3998/mpub.915367
- Khakpour, Porochista. Sick: A Memoir. New York: Harper, 2018.