I recently saw a playwright I had studied with at a cafe. Her mother had just been hospitalized and this led to a discussion of how women’s symptoms of heart attack often present differently than the “typical” signs we’ve been told to look for. Nausea and vomiting, pain radiating up the arm, shortness of breath, fatigue and sweats. Not crushing chest pain. Gender plays a role in how an illness presents and how medications work, and it can affect prescription dosages too. Women make up half the population but most medical research is biased toward men. My grandmother also suffered from a few heart attacks with atypical presentation. It was a challenge to persuade her to go to the doctor then, or ever. While her reasoning was never explicitly stated, it was clear that she would rather die than spend more time institutionalized, which was how she passed a number of her middle years, due to schizophrenia.
Women make up a disproportionate number of mental health cases, too. We are twice as likely to suffer from depression. Twice as likely to develop an anxiety disorder. At greater risk than men for developing bipolar disorder and seasonal affective disorder. As I have been thinking more about women and illness, I’ve been struck by the proliferation of memoirs about women’s illness published recently—and there’s more on the horizon, including Anne Boyer’s much-anticipated memoir, The Undying, recently excerpted in The New Yorker. There were enough that I started thinking of these memoirs within their own subcategory, what I came to call “sick-girl narratives,” a term that aligns with Tiqqun’s Preliminary Materials for a Theory of the Young-Girl. The only requirement for the Young-Girl is that “she” is a model citizen, i.e., consumer:
The Young-Girl is not always young; more and more frequently, she is not even female. She is the figure of total integration in a disintegrating social totality.”
The Young-Girl is ever consuming, is desirable; she is spectacle, a brand, a handle. In this way, the healthcare industry has made us all Young-Girls as our bodies have entered its labyrinthine system.
The healthcare industry is this country’s largest employer and accounts for nearly 20 percent of the GDP. It may not be apparent to readers of this site, but I have been working in healthcare for as long as I’ve been out of undergrad. My first degree was in pharmacy and for nearly 20 years I have been writing alongside working in hospitals, in long-term care, and now for a drug company. I’ve had a good glimpse of healthcare’s flawed systems as a provider as well as a patient.
I’m sure I don’t need to tell you that healthcare prices are rising and we receive fewer services in return—we’ve all felt the pinch. What does this mean in real-life terms, in our era of late capitalism? I am relatively healthy; my only real problem is a tendency toward depression that’s relatively under control. Even so, medical expenses are my largest monthly pay out, even taking into account the government credit. I am grateful for Obamacare, or rather, despite Obamacare being flawed and slowly being undone by many forces, I am grateful that I am able to afford the support I need. In 21st-century America, healthcare is a privilege few can afford, not the accessible and affordable service that it should be.
Our narratives have been shaped by the ways we experience illness, by the illnesses we live with, by the advertisements we see on TV that make us wonder if we are less happy than we should be, if our bowel problems could be eased, or perhaps our social malaise can be cured at the local ketamine clinics that now sponsor public radio. Illness is a lens through which we see ourselves. How could it not be? So much has been written on the experience of being ill, from Virginia Woolf and Susan Sontag to Robert Burton and William Styron. But that’s not the point. The point is that the industry has its grip on our wallets and our bodies, and thus our minds. This has played a role in making medical narratives a primary focus.
Our bodies and their state of upkeep preoccupy us, in part because we are built for this, but also because our healthcare systems rely on this and our recurring needs. When we’re ill we have little choice but to forge ahead and try to find our way through the convoluted and often disorganized system. Illness takes a toll not just physically but also financially. Nearly half of people diagnosed with cancer drain their total assets within two years. As Tiqqun states: “The initial form of Biopower is a process of submission to and by the body.” The point I’m getting at is that our preoccupation with medicine isn’t coincidental. It’s systemic, and this plays a role in the stories we’re drawn to and the stories we tell, such as these memoirs of illness and specifically those of the sick-girl.
Let’s consider this rather sudden appearance of memoirs written by literary women who’ve published at least one novel. Each of their current books is devoted to chronicling struggles with an affliction, whether it’s addiction or mental illness or late-stage Lyme disease. It’s possible that their inclinations toward writing fiction have made them more adept at depicting the emotional terrain of their own lives. In memoir, the empathy the novelist would bestow upon her characters is turned on its head. As Leslie Jamison writes in her essay, “Empathy Exams,” about her job as a medical actor role-playing sick patients for medical students learning how to diagnose, empathy is a focused and discrete attention paid to another’s experience that requires an effacement of self: “Empathy isn’t just remembering to say that must really be hard— it’s figuring out how to bring difficulty into the light so it can be seen at all. Empathy isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing.” In the sick-girl narrative, the attention is turned inward to chronicle the author’s experiences of recognizing, treating, and living with illness. The empathy evoked is of the reader, who is encouraged to find compassion for the author’s account.
In The Recovering, Leslie Jamison writes about her struggles with alcoholism while also attempting to disrupt our culture’s mythos of the alcoholic creative genius. Jamison has stated that her intention was to elevate a multiplicity of addiction narratives while examining alcohol’s detrimental effects on some of the literary alcoholics who have been immortalized—from Raymond Carver to John Berryman to Jean Rhys to Denis Johnson (the list goes on). However, Jamison’s statement comes off as somewhat disingenuous when considered alongside the book’s contents. She isn’t employing Svetlana Alexievich’s methods of self-effacement by creating a tapestry of voices. Instead Jamison’s recovery narrative forms the backbone of the book, upon which these other compelling addiction narratives hinge. I mostly find Jamison’s account of her attraction to and subsequent struggles with alcohol solipsistic for the way that her story overwhelms the others. It’s not that she lacks empathy when retelling these stories. Rather, Jamison’s scrutiny and focus on her own struggles with alcohol dominate the book. Her intense first-person account overshadows the myriad other voices of addiction interspersed throughout the book’s 545 pages. (Mind you, I did first encounter the book on Audible, during a road trip where I listened to Jamison read her text for hours on end—there was no escaping her voice. It’s possible the book may have left a different impression had I first encountered it on the page.)
And yet, what memoir couldn’t be called solipsistic? It’s Jamison’s denial that The Recovering gives her narrative primacy that I find frustrating. Jamison aligns her plight with the struggles of the creative genius by placing them side-by-side. This is a longstanding trope of the “mood memoir,” writes Katie Rose Guest Pryal. The mood memoir is a subgenre in a long tradition of memoirs, including slave narratives and spiritual memoirs, told in order to give voice and authority to the oppressed. Daniel Paul Schreber is the author of perhaps the first contemporary mood memoir, Memoirs of My Nervous Illness—but, even so, his long trippy text is also part spiritual narrative. In his hallucinations, both God and demons spoke to him directly. In the preface, Schreber explains that his intent in writing the memoir is twofold. He wants to declare what has been revealed through his direct communication with God, and he intends to offer an explanation for his “oddities of behavior” and eccentric beliefs to the community he will rejoin when he leaves the asylum.
Guest Pryal writes that one of the four key features of the mood memoir is that it points to other well-known people who have lived with a similar affliction, in order to establish their authoritative stance and to imply this impairment can also be a gift. Jamison does this with a twist. While Jamison’s stated intent is to reveal the bleak toll alcoholism takes on even these wildly creative individuals—such as when Jean Rhys and her husband drank Champagne to calm their nerves as their baby lay dying at the hospital—I sense in this iconoclasm an underlying reverence for these myths. I mean, how awful and yet how wonderful that Rhys’s Good Morning Midnight exists. I think most young writers, myself included, have fallen prey to the myths of their literary heroes. It’s one thing to encounter an author on the page and another thing all together IRL.
In meeting Jamison on the page, I wish she had lingered longer with her moments of vulnerability. How tortured she was by the shame of her intense shyness and naiveté. How she questioned the contradiction of self-effacement despite her strong, driving ambitions. But she glossed over this for better plot points: We hear of her drinking excessively while pregnant, while wearing a heart monitor, drinking often and in ways that gave her access to communities with cachet, via parties at Yale, at the Iowa’s Writer’s Workshop. Jamison desired to live largely, like Icarus flying near the sun, and she fell. And yet, how far? This isn’t the question to ask of an author attempting to subvert the notion that a story must be original or extraordinary to have value. One point that does come through is that it doesn’t matter how far one falls, whether one drinks herself into a coma or never misses a deadline. The daily struggle to become and remain sober is as real and perhaps even more so when admitting the ubiquity of this plotline.
“Pacing, they told me at graduate school, is one of the beginning writer’s biggest challenges, because a beginning writer wants to tell all the wrong things, or everything at once,” writes Esmé Weijun Wang in her book of essays, The Collected Schizophrenias, that recounts Wang’s experience living with schizoaffective disorder and examines the scope of what living with schizophrenia means in its myriad varieties. The remark about pacing is made as she recounts preparing for an appointment with her psychiatrist, where they will decide whether she should receive electroshock therapy, used to treat severe depression and mania and a host of recalcitrant symptoms of mental disorders. Wang doesn’t discuss the treatment, its implications, the potential side effects of retrograde amnesia, or the treatment’s long history of use and efficacy despite its associated stigmas. As Wang prepares for her consult, she is deciding what to wear. Look too put together and her suffering will not taken seriously. Look too disheveled and she might be admitted to the psych ward.
I was befuddled by this emphasis on Wang’s preparation for the consultation rather than what transpired. The reader never learns the outcome, if she endured ECT, what her physician recommends. That couldn’t be her point, could it? Perhaps. This interruption gives way to more questions. Why does she stop here? Is Wang attempting to give a play-by-play account of her medical history? She certainly isn’t. Instead it seems she’s revealing how she must be hyperaware of her presentation of self and symptoms, as if she needs to enact an idealized version of her illness. Whose ideal? The doctors’? Or the industry’s? One that conforms just enough to the DSM? All of the above. It’s evident Wang adjusts her appearance so that her illness will be visible but just enough. Unlike Jamison’s role as a medical actor, Wang is enacting the symptoms of her own disease. Is this manipulative? Yes, and unfortunately it’s necessary. Wang has learned that this is a way she can navigate the system.
She then directs the reader’s attention back to her preoccupations: her fear, her ability and inability to negotiate the system, a nurse who blames Wang for her delusions during another hospitalization—a result of her lacking faith in Jesus, the nurse claims. Which opens another can of worms, including how is our system even called healthcare? This nurse is assumed to be the “sane” care provider, while it’s obvious that she suffers from her own delusions.
Wang reveals again and again through her own encounters with the medical system that treatment for mental health operates on many tiers. Our individual experiences are modulated by the treatment we have access to and the healthcare systems we navigate. But so much about our experiences also comes down to personal interactions: the nurse who is attentive or stretched too thin. The dismissive doctor or the practitioner with a vested interest in isolating a difficult-to-pin-down diagnosis. Wang recognizes the importance of perception, and her role in what she signals to her providers. Her history as a fashion blogger helps her here. Again, I’m thinking of the Theory of the Young-Girl. The skills of manipulating her appearance, of the performance of everyday life (à la Erving Goffman) are inherent to her way of defining self. She’s very sophisticated in her presentation, in her appearance, and to be able to gauge how she will appear to someone else. She’s an expert navigator, generally able to recognize the difference between her perception and reality, and she’s largely able to see where these points converge. Dressing to impress or to seduce or to signal that she’s ill—it’s all about appearances.
Wang can pass as neuronormative in society and she’s aware of this, that this gives her autonomy and power and respect that’s not afforded to those who are less able, lower functioning, less intelligent. However, Yale wasn’t compassionate when Wang became incapacitated and was admitted to the psych ward. Wang’s expulsion, resulting from her psychiatric hospitalizations, and Yale’s later refusal to readmit her is shocking. It sends a striking message about how her mental illness stigmatized her, even after it was controlled.
Self-worth is an obsession that haunts Wang throughout the book. She often highlights her credentials as if she needs to prove herself to her audience. As if the reader needs a reminder that her capacities are far vaster than her diagnosis. As if she needs to remind herself of her self-worth. She says more than once that having gone to Yale is a signifier of her value. Similarly, she makes sure to remark during a speaking engagement that she went to a “prestigious university”: “That phrase, ‘prestigious university,’ was there to underscore my kempt hair, the silk dress, my makeup, the digniﬁed shoes. It said, ‘What I am about to disclose to you comes with a disclaimer.’ I didn’t want my audience to forget that disclaimer when I began to talk about believing, for months at a time, that everyone I love is a robot.” Her emphasis on these external markers can be frustrating to someone who doesn’t buy into the institutional prestige machine, that credentials make for valuable people. And yet, I empathize with Wang’s need to demonstrate her value by reminding us of the intrinsic value of her personhood.
This focus on value is not coincidental. As Tiqqun writes, value is the standard measure of self, and that this image must be perpetuated and sold. “The Young-Girl would thus be the being that no longer has any intimacy with herself except as value, and whose every activity, in every detail, is directed toward self-valorization. At each moment, she affirms herself as the sovereign subject of her own reification.” Wang’s personhood and intelligence has been devalued by her diagnosis—by the academy, by the healthcare system, by society—and so she reasserts her value again and again. But what about lower-functioning schizophrenics? What does this mean for those who don’t have a Yale admission? Wang speaks within this system of value, rather than questioning why she feels she must.
Without Wang’s delusions and hallucinations, which at times result in incapacitation, she would appear to be living a wildly successful version of a life. She is impeccable on paper—with a psychology degree from Stanford and an MFA from the University of Michigan. Her accolades include being anointed one of Granta’s Best Young American Novelists and winning a Whiting Award for her nonfiction. She married her college sweetheart who she met during her first tumultuous year at Yale. On the surface, she’s the epitome of achievement. As Katie Rose Guest Pryal states, disability must be made invisible in the mood memoir. In this sense, it’s no surprise that Wang’s narrative has been embraced by People and the Today show. She demonstrates without fail how she’s an exceptional person. That Wang is exceptional is part of why it’s easy for the media, and the public at large to embrace her narrative, and her disability. Guest Pryal writes: “The rhetoric of these memoirs “tends to remove the stigma of disability from the author, leaving it in place for other individuals with the condition in question.” So this is the trickle down theory of uplift.
Wang knows mental illness is in her genetic make-up, with her mad great-aunt and her mother’s cousin who committed suicide and her mother, who at one point suggested that she and her daughter kill themselves together. Perhaps mental illness is also environmentally triggered, triggered through trauma. Wang encounters a neurologist who says that one day all mental illness will be linked to autoimmune disorders. Wang has flare-ups that appear with a fever, without a trigger, and she seeks answers, a cure. She wonders if late-stage Lyme disease could be a culprit—while also admitting that Lyme disease is a “belief system” of its own. Late-stage Lyme is difficult to pin down, with many diffuse symptoms in people who often otherwise appear well. What they share is, “desperation based in suffering, and based on a system of conventional medicine that not only has no method of alleviating that suffering, but also accuses us of psychosomatic pathology.”
This accusation of psychosomatic pathology is no stranger to the sick girl. Think of hysteria of the old days and the water cure. Women with illness are viewed as less reliable narrators. Women with pain are more likely than men to be prescribed sedatives; they experience pain longer in the ER before being given an analgesic. Women experience the majority of chronic pain and yet the majority of pain studies focus on men’s pain. To be taken seriously the sick girl must appear ill, and if ill then also weak, and if weak, then she is less likely to be taken seriously. It’s a loop that’s easy enough to enter but difficult to emerge from healed.
Late-stage Lyme sufferer Porochista Khakpour is a friend of Wang’s and they seek Lyme treatment together in Santa Fe, N.M. Khakpour is also an author of a sick girl narrative, the aptly titled Sick, which explores her confluence of afflictions: addiction, depression, and late stage Lyme. Khakpour is a self-confessed sick girl of many kinds. “People ask me for advice, and I tell them to look elsewhere…I am not the poster girl for wellness,” she writes. “I am a sick girl. I know sickness. I live with it. In some ways, I am keeping myself sick.”
It’s impossible to isolate Khakpour’s symptoms as related to her individual illnesses. Her depression, addiction, and neurological deficits from late-stage Lyme intermingle. She’s lived in exile most of her life, a child of the Iranian Revolution, whose family sought political asylum in the U.S. She writes that she’s never felt at home in the world. This alienation plays its own role in the manifestation of her illness. Her community has failed her, and now the medical industry is failing her again. They will be her audience, however, as long as she can pay them. Tiqqun writes, “The Young-Girl mortified her flesh in order to take revenge on Biopower and the symbolic violence to which the spectacle subjects it. The distress she exhibits overwhelmingly reveals, in its former aspect of unshakeable positivity, sexual pleasure as the most metaphysical of physical pleasures.” Khakpour’s photo, face forward, wearing a nasal oxygen cannula, would not be on the cover of the book if there weren’t enacting a form of seduction while playing up her sick girl visage.
She had originally planned to write a book with more of a conventional narrative arc, one of recovery and triumph, where she heals herself. It’s wishful thinking as this isn’t the path her chronic illness takes. Instead, it persists and she continues to seek medical care, and her life is a revolving door of practitioners who want to help, who try to help, who are quacks, who are incompetent, who lack time, who lack compassion.
I admire how Khakpour allows the unforeseen progression of her illness to reshape and muddy the conventional arc she’d planned. She follows it down its rabbit hole. This narrative off-roading, if you will, “reminded [her] that illness will always be with you as long as life is with you. And tragedy will be with you too.” Khakpour’s multiple diagnoses have presentations that aren’t necessarily discrete from each other, that bleed into each other. It’s complicated. The comorbidity of mood disorder and late-stage Lyme, which some write off as “psychosomatic” doesn’t help her come off as a reliable narrator within the healthcare system. She deserves and needs a sensitive and knowledgeable practitioner to suss out the etiologies of her pain. She can afford this, at times. But also, her medical expenses exceed her resources and she must rely on a GoFundMe, to offset her debts—a system that relies on the generosity of others, their compassion and empathy and call to action. Her narrative extends validation to others who are suffering without acknowledgment, but her story also validates her own suffering. As Khakpour writes: “And the deal with so many chronic illness is that people won’t believe you. They will tell you that you look great, that it might be in your head only, that is likely stress, that everything will be okay. None of these things are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind.”
One of the sick girl’s biggest challenges is having practitioners take her pain seriously. If her presentation of symptoms is evasive, non-specific, she must act the role of the weak woman in need of help. Her sickness doesn’t conform to the physician’s diagnoses, there are no effective treatments for post-treatment Lyme disease, i.e. the symptoms of Lyme disease that persist after a course of antibioitcs. Even the Center for Disease Control and Prevention’s resources state a skepticism regarding symptoms that remain post-treatment. The sick girl is solipsistic because the system forces her to be preoccupied with her body, and she is preoccupied because she is suffering. She must follow her pain, listen to her intuition, in order to receive attention and care, to seek and find relief. And the general disbelief from the system, when doctors don’t clearly see the results they’re looking for, turns on her itself. The sick girl questions her sanity. Khakpour makes too many ER visits to keep track of, seeks referrals and opinions, tries alternative therapies that cost up to $1000 a day. Think of all the energy her illness requires. Think of the monetary drain. Think of her adjunct’s salary and what she can afford. What she can’t afford. How she barely has the time or energy to teach. She’s not a model of health, but she deserves to be seen by doctors and followed by a team of healthcare providers. She deserves to have her pain taken seriously and a Lyme disease assay to be taken when it’s first suggested. This is not the story she lives out. This is not the system available in our country.
Without capital, without Biopower, without a man’s body, without a neuronormative mind there is less care available than there should be. I wish we were closer to creating a network of support more focused on sustaining health than on the accrual of wealth, but wishing isn’t enough when it comes to one’s health. The repetition of chronic illness, of seeking help, of having to advocate to receive good care, is maddening. The industry thrives on it. And other industries also feed off it, including publishing, including the propagation of the sick girl and her narratives. So much is about what is made visible. One thing is sure: the suffering is real, and continues. As Wang stated, she doesn’t ever expect to be cured, and through our experiences we come to see ourselves anew: “I …do not consider it possible to ever be completely free of the schizophrenias. They have been with me for too long, I think, to be obliterated, unlike these more recent ailments, which feel like part of the wrong narrative, and make me wonder how many different types of sick girl I can be.”
Image credit: Unsplash/ Lacie Slezak.