Is Lyme disease a feminist issue? It may sound ludicrous to ask this of a tick-borne infection that can usually be dispatched with a course of antibiotics. Yet its name commemorates the two women living in the town of Lyme, Connecticut, who, in the mid-seventies, fought the medical establishment to have the disease acknowledged and treated. “You know,” a doctor informed one of them after failing to find the source of her symptoms, “sometimes people subconsciously want to be sick.” It’s tempting to think of this reflexive, paternalistic skepticism directed at female patients as a remnant of a bygone era. And yet there’s a class of illnesses—multi-symptomatic, chronic, hard to diagnose—that remain associated with suffering women and disbelieving experts. Lyme disease, symptoms of which can afflict patients years after the initial tick bite, appears to be one.
“I don’t care if people don’t think feminism is important, because I know it is,” the musician and early Riot Grrrl Kathleen Hanna says toward the end of “The Punk Singer,” Sini Anderson’s 2013 documentary about her. “And I don’t care if people don’t think late-stage Lyme disease exists, because I have it and other people have it. . . . If they don’t want to believe in it or they don’t want to care about it, that’s totally fine, but they should have to stay out of my way.” She describes an experience common to many sufferers from chronic illness—that of being dismissed as an unreliable witness to what is happening inside her. Since no single medical condition, a doctor once told her, could plausibly affect so many different systems—neurological, respiratory, gastrointestinal—she must be having a panic attack.
But it isn’t only a question of whether or not individual patients are believed. An enigmatic disorder that might have justified a great influx of research money and ingenuity has instead remained stalled and under-investigated, with key players unable to agree on basic facts, such as what it does, how to tell who has it, and what, if anything, can treat it. The standard two-tier test for Lyme, established in 1994, is extremely imprecise, prone to false positives and false negatives. It detects only the antibodies mustered to combat the bacteria, so it isn’t a reliable way to ascertain current, persistent infection. (Whether the symptoms are caused by ongoing infection or are merely an aftereffect of an earlier one is among the most contested questions in the so-called Lyme wars.) The test will give a pass to patients whose immune response has been quieted by antibiotics yet can be triggered by certain antibodies that may be present in non-sufferers.
Researchers and insurers have often insisted not only on positive test results but also on the classic signs of early Lyme infection, such as the distinctive bull’s-eye rash and swollen knee joints, even though many people infected with the spirochete bacterium do not present such signs. Some of the symptoms of “chronic Lyme”—headaches, exhaustion, and cognitive dysfunction—have been dismissed as too vague or too similar to those of other conditions to be accorded diagnostic weight. Given these vagaries, it’s impossible to say for sure whether chronic Lyme actually does affect a greater number of women than men. But there’s a sense in which the condition itself has been feminized. In a 2009 paper, Gary Wormser and Eugene Shapiro, two of the authors of the Infectious Diseases Society of America guidelines on Lyme treatment, concluded that “illnesses with a female preponderance, such as fibromyalgia, chronic fatigue syndrome, or depression” might be receiving a false diagnosis of chronic Lyme. That conclusion seems preordained by the authors’ starting assumption that chronic Lyme—“a vaguely defined term that has been applied to patients with unexplained prolonged subjective symptoms”—doesn’t really exist. Yet even those in the field who discount the phenomenon of chronic Lyme concede that there are people who suffer “prolonged subjective symptoms” long after they have resolved the initial infection—a “severe impairment” often labelled post-treatment Lyme disease syndrome. To begin from the premise that a condition is imaginary is to prejudice efforts to provide a physiological explanation. In the nineteen-nineties, the Centers for Disease Control was found to have used millions of dollars in research funds intended for myalgic encephalomyelitis / chronic-fatigue syndrome (ME/CFS) for other purposes, in the belief that the disorder was not worth exploring.
This approach is self-confirming: the more that sufferers from a debilitating illness are excluded from mainstream medicine, the more they’ll be forced to consider quack treatments and the less credible they may appear to be. The stakes of belief are high in the case of Lyme, because the longer it is left undiagnosed the less likely it will respond to treatment (usually oral or I.V. antibiotics). So the lengthy, flawed, and often prohibitively expensive process of receiving a diagnosis can have dire consequences.
At first glance, the novelist Porochista Khakpour, who chronicles her own experiences with Lyme in a new memoir, “Sick” (Harper), seems rather less battle-hardened than you might expect. The cover offers a portrait of the author as a fragile, dark-eyed beauty, her face bisected by a nasal cannula, and the book sustains a note of ambiguous unease. What, exactly, is wrong with her, she imagines the staff at Mount Sinai wondering during the last of many E.R. visits described in “Sick”: “Is this cardiac, is this neurological, is this psychological, is this infectious disease?” And where and when did it begin? Despite its intermittently chatty tone, “Sick” is a strange book, one that resists the clean narrative lines of many illness memoirs—in which order gives way to chaos, which is then resolved, with lessons learned and pain transcended along the way. Nor does the book try to preëmpt doubt or blame by emphasizing the author’s irreproachable state of mental and physical health before misfortune struck. “I have been sick my whole life,” Khakpour writes at the start. “I don’t remember a time when I wasn’t in some sort of physical or mental pain, but usually both.”
“Sick” reënacts her halting, years-long journey toward a clear diagnosis, sketching in her burgeoning career as a writer and her various love affairs and friendships along the way. It proceeds by fits and starts, organized not chronologically or even by theme but by geographical setting, so that, as she circles from Los Angeles to New York to Santa Fe and on to Europe and back, a spiral shape emerges, not unlike that of the offending bacterium. She is diagnosed with Lyme more than once, although her grab bag of “nebulous” symptoms are also attributed to a number of other things, from polycystic-ovary syndrome to an adrenal tumor, then to anxiety and depression—not to mention “somatization disorder,” which seems to be used more or less as a synonym for what was once called hysteria. By focussing on place, Khakpour implicitly situates herself in the long line of women who have been, as the writer-director Todd Haynes has put it, speaking of his 1995 film “Safe,” “pathologized by their own dis-ease in the world.”
Because a sense of uncertainty and dislocation is central to the book, the reader inhabits Khakpour’s confusion and is occasionally tempted to mistrust her perceptions. In her desperation for a cure, she seems willing to bankrupt herself with endless medical consultations, and to entertain all sorts of unorthodox theories. At other times, she avoids mentioning Lyme altogether when admitted to the hospital, keen to skip the knee-jerk mockery and mistrust of the medical staff. At one point, at a doctor’s insistence, she agrees to enter a psychiatric ward, and endures three days in the holding area, being told that “there is nothing physically wrong with you, you need to understand that.” Only the severity of her physical symptoms, which is such that she cannot be “medically cleared,” prevents her from becoming a psych patient.
Nonetheless, Khakpour isn’t much worried about coming across as unhinged. Returning home, in California, to rest, she screams at her mother about a chemical detergent she’s using to clean the kitchen: “See, you’re trying to kill me! You brought me here to finish the job!” Though she’s worn down by her mistreatment at the hands of some of her doctors, Khakpour seems unsurprised; as a woman of color, born in Iran, she begins from the assumption that many Americans will find her suspect. Her lack of defensiveness is perhaps the book’s most remarkable quality. When doctors disbelieve her, or when her relapses reliably “coincide with global turmoil,” she wonders whether her symptoms might indeed be psychosomatic, some form of P.T.S.D.; after she becomes addicted to the pills prescribed to treat her insomnia, she seems open to the suggestion that maybe her addiction is the main source of her problems. She cheerfully lists the ways in which she damages her own health, including by smoking cigarettes every day during the writing of her book.
What’s more, she confesses to a long-standing tendency to romanticize both physical and mental illness: she remembers passing out at thirteen as “the first time I got to feel like a woman,” associating “ailment” and endangerment with femininity, and feeling “disappointed” when the family physician told her fainting was normal for her age; even when she tries to resist being dumped in the psychiatric ward, she notes that “a part of me had always dreamed of its unknown underworld.” In other words, she seems ever ready to consider the possibility that her sickness is either innate or something she has “brought onto myself.” “I am a sick girl,” she writes. “I know sickness. I live with it. In some ways, I keep myself sick.”
Other recent portrayals of controversial chronic illness generally take pains to weave in reassurances for their audience. The accounts of ME/CFS in Julie Rehmeyer’s memoir “Through the Shadowlands” and Jennifer Brea’s documentary film “Unrest” log the struggle of their protagonists to overcome initial diagnoses of psychosomatic responses to stress or, in Brea’s case, some “distant trauma I might not even be able to remember.” Understandably, then, both women are careful to emphasize their previous strength and competence, reinforcing the sense of what illness has cost them and also letting viewers and readers know that, however bitter the public disagreements between advocates and researchers in the past over the status of ME/CFS, we are in safe hands here. Rehmeyer, starting with her book’s subtitle—“a science writer’s odyssey into an illness science doesn’t understand”—regularly underscores her respect for hard science and her qualifications therein, as someone who once studied mathematics at the graduate level at M.I.T.
Brea has the advantage of visual footage to demonstrate her transformation from an energetic young woman who enjoyed kayaking to one who, on many days, can barely drag herself up off the bedroom floor. But her film also includes a kind of stand-in and guarantor for any potentially skeptical viewer, in the form of her husband, Omar Wasow, whom she met when they were both Ph.D. students at Harvard. Wasow stuck by her as her health deteriorated, and, in addition to giving the film a central love story, he provides a subtle form of reality-testing, as when we see them argue about Brea’s attempt to avoid microscopic traces of mold. If he could even briefly feel what she’s feeling, she tells him, the signals her body is receiving, he’d know it’s worth taking these extreme precautions. “Right,” he says, gently, “and conversely, if you lived with the total absence of these signals, you’d feel insane every time you’re making some great adjustment in your life” to deal with some entirely undetectable threat.
By nonetheless continuing to believe in her experience, Wasow serves a function similar to that of the strapping husbands and sons and brothers who, it’s said, possess an inexplicable power over doctors. Bring a sensible-seeming man along to your appointment or to the E.R., Maya Dusenbery, an editor at the Web site Feministing, suggests in “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick” (HarperCollins). It’s the best way to insure that you are given the benefit of the doubt, and will not become one of the countless cautionary tales that fill her book—women who are sent home mid-heart attack to calm their nerves, or with an appendix on the point of rupture, or otherwise left untreated and worsening for years on end. As in so many other areas of American life, women of color often endure the most extreme versions of this problem.
In light of the disturbing stories and statistics Dusenbery gathers, one could read Khakpour’s approach as a refusal to play an unwinnable game. A woman with chronic Lyme (or ME/CFS, or fibromyalgia, or any number of poorly understood conditions) can’t be guaranteed fair treatment from the medical establishment. Dusenbery frames the central problems as “a knowledge gap” and a “trust gap,” both of which are systemic and self-reinforcing. Doctors still know far less about diseases that primarily affect women and about how common conditions such as heart disease express themselves in women’s bodies as opposed to men’s; they also, research suggests, tend to disbelieve women’s accounts of their pain and other symptoms, creating a familiar series of double binds. Signs of either distress or stoicism may equally lead them to discount a woman patient’s pleas (she’s just overreacting, or else it can’t be that bad). A psychiatric diagnosis can be made on a hunch, and any resistance to that diagnosis can then be reframed as evidence of its correctness. Dusenbery quotes a member of the board of the American Autoimmune Related Diseases Association as saying that, not so many years ago, “mental health professionals were often the first to make a correct diagnosis” of autoimmune disease; after all, psychiatrists lack the incentive that other physicians have to treat their field as a dumping ground for irritating women and their unidentifiable problems.
In “Illness as Metaphor,” Susan Sontag points out that the illnesses doctors are quickest to brand as psychogenic are those they understand the least—multiple sclerosis was once routinely mistaken for some sort of hysterical paralysis—and that these are also the conditions that inspire metaphorical thinking on a grand scale: “Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance.” She warns that “nothing is more punitive than to give a disease a meaning—that meaning being invariably a moralistic one.” This idea implies an injunction against interpretation and against narrative shaping that’s all but impossible for a writer on the subject to obey. Even Sontag herself admitted to having cheated in “Illness as Metaphor,” borrowing “narrative pleasure” from the other writers she quotes, who had made free with precisely the sorts of mystification of illness she was arguing against. So seductive is narrative logic that Julie Rehmeyer claims to have found consolation in the absence of a “clear, unambiguous, scientifically ratified explanation for what had happened.” The “upside” of being struck with a crippling mystery condition was that “the experience had an openness, a fertility about it—I felt more room to create my own meaning.”
Patients typically seek comfort in more fixed forms of narrative, of course: finding a name for their condition, and with it an implied structure for their inchoate experience, can in itself ease suffering. Khakpour tries several times to reconstruct an origin story—a time when she could have been bitten by a tick in childhood, or a period spent in bucolic surroundings with a wealthy boyfriend whose mother had herself contracted Lyme. There is a longing for clarity, dogged by a suspicion that none is possible. She imagines her illness as a monster that wakes and sleeps at unpredictable times and cannot be fully understood, at one point asking, “Does it need a name?” By the time she finally receives a definite diagnosis, she has to ask two doctors repeatedly to confirm what they’ve seen in her blood work. So consistently disbelieved, she now remains partly trapped in a disbelief of her own, and yet simultaneously experiences “such a release that it felt almost violent.”
The feminist literary critic Christina Crosby, in her devastating book “A Body, Undone: Living On After Great Pain,” recounts that, after a biking accident left her a quadriplegic, she gained a new affinity for horror as a genre. Of course, an incurable chronic illness of unknown origin that ravages the sufferer while remaining suspect and all but undetectable to those around her has the hallmarks of horror. So does the difficulty in knowing whom to trust, when some doctors try to help at the risk of professional penalties and others exploit the vulnerability of sufferers, sucking up vast sums for unproven remedies. In Brea’s film, we learn of a Danish family whose child is taken away by the authorities and held for years, in the belief that her parents, by treating her ME/CFS as real, have effectively been abusing her and keeping her sick. Crosby’s reading of a Poe story in which “every element of the narrative is overcharged with significance, every detail mysteriously endowed with a blank surplus that oppresses rather than enlightens”—and that continually invites the reader to try to figure out what’s going on while repeatedly frustrating those efforts—could certainly be applied to Khakpour’s book, with its paranoid logic and spiralling, dizzying structure. Like Haynes’s film “Safe,” her memoir evokes the mood of horror without the genre’s opportunities for relief, and it allows illness—along with its supposed remedies—to be read both as an escape and as an isolating, suffocating captivity.
Rather than wrestle her subject into more comfortable territory, Khakpour forces her reader to deal with unrelieved uncertainty. Something is wrong, has been wrong since her childhood, when her family was exiled after the revolution in Iran. And more continues to go wrong: car crashes, violent boyfriends, a rape referred to in passing but never addressed directly. For much of the book, attempts to unravel the central medical mystery lead only to further entanglement and mistrust, as when she realizes that a group who claim to be trying to help her are actually Scientologists looking for another recruit. In a cab to the E.R. on her birthday, convinced she’s going to die, Khakpour puts her mother on hold during a call in order to soothe the imagined fears of 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.” Often in her story, terror seems to float free, moving from person to person and unsure of its precise object. The fear that horror stories induce, as Crosby writes, “is the fear of fear itself.”
“Sick” isn’t written like a manifesto—no cool marshalling of the evidence and no polemical tone—but it is one. In her acknowledgments, Khakpour claims a debt to her far-flung community of “sick people,” women of color, especially, saying the book “was all for you.” She dramatizes a paradox: solidarity with other sufferers is a source of both comfort and information, and yet it can also lead you to be written off as one more member of the herd of suspected malingerers. Like her impulse to reassure the cabdriver that she is not one of those “bad people,” the temptation to separate herself from her fellow-sufferers is one she exposes and ironizes in order to resist it. It can seem that Khakpour is daring the reader to find her draining, histrionic, inconsistent, to sympathize with doctors who may view her as what Dusenbery calls a “heartsink” patient. But she is also making the case that nobody should have to be a reliable narrator or a hyper-rational patient in order to receive basic respect and compassionate, creative treatment.
Virginia Woolf, in the essay “On Being Ill,” wondered why illness had not yet taken its rightful place in literature, alongside love and war. Readers might complain, she suspected, that it “lacked plot,” and certainly it would call for “a new language,” “more primitive, more sensual, more obscene.” Even to describe a headache to your doctor, she wrote, would require you, pain in one hand and “a lump of pure sound in the other,” to “so crush them together that a brand new word in the end drops out.” Pain and disease are what they are—they resist meaning and the narratives that make it. Other people’s sicknesses, as bodily phenomena, must be imagined or taken on trust, since they can never quite be transmitted across the gap. Woolf identified both the sick and their caretakers as outsiders by default. Invalids are “deserters” from “the army of the upright,” and, she noted wryly, anyone who takes the time to engage with them must be likewise: “Sympathy nowadays is dispensed chiefly by the laggards and failures, women for the most part . . . who, having dropped out of the race, have time to spend upon fantastic and unprofitable excursions.”
Khakpour at times presents herself this way—a misfit, or a conscientious objector, but one among many. Unfortunately, for the situations described in books like hers and Dusenbery’s to change, it’s not the patients who would need to be more open, curious, unbeholden, and willing to spend their time on strange and unprofitable explorations; it’s the doctors, and the institutions that direct and fund medical research. In an afterword to a recent edition of Woolf’s essay, Rita Charon, a doctor and the executive director of the Narrative Medicine program at Columbia, advocates for medical practitioners to adopt “the clinically powerful stance of radical ignorance” or “radical unknowingness.” “As long as I don’t assume anything about a person in my care,” she writes, “I may learn something that will help.” As an aim, “radical ignorance” may go too far; without doctors making certain inferences based on their existing knowledge, there can be no diagnosis. And yet, when disorders with such drastic effects remain so little understood, researching and treating them may require that much more humility and imagination. Given that medicine is itself a narrative practice—in which the case history has always played a central part—it, too, might benefit from a respect for ambiguity. ♦
This article reminded me of our journey. Since both my husband and I were infected we went to our doctor together. I was meticulous about keeping records of our symptoms and noting changes. I realized quickly that the doctor tended to believe me when my husband backed me up. We chuckled about this between the two of us because we fought this together but it’s not a laughing matter and I worry for those who are alone. If you find this tendency it may be worth finding another patient who is in your corner and going to each other’s appointments. Two heads can be better than one and if the doctor tends to discount you, having a buddy speak up for you may truly help. We shouldn’t have to do this but we have to do what we have to do to get better.
For another article on Khakpour’s book: https://psmag.com/social-justice/this-book-kept-me-alive-a-conversation-with-porochista-khakpour