For as long as I have experienced chronic illness, stories are how I have made sense of my body— to myself or others. I have told these stories to those wearing the all-knowing white coats. I have told these stories to those in cut-off jean shorts sipping cold beers. I have told these stories to myself, staring at the ceiling at 3 a.m., trying to piece together the symptoms and experiences that brought me to this present moment. To heavily paraphrase Joan Didion, we tell stories to see our lives lived.
I have my “elevator pitch.” An almost tweetable statement, adaptable for the audience:
I was 15 when I became symptomatic after a strange bug bite. For a few years, my symptoms remained elusive. But they became more acute during college, and I was diagnosed with Lupus in my early twenties. I work hard to manage my symptoms with meds, diet, and exercise.
I don’t leave the listener feeling too sorry for me. If the listener is a physician, I list the timeline of symptoms without interpretation. If the listener is you, I might offer an interpretation. Something like it’s hard but has made me stronger to close the conversation.
The more honest story is a more complicated narrative. I don’t know if that bug bite started the chain of events, but I need some kind of beginning. My disease is and is not lupus; the doctors are inconsistent in their diagnosis. Some days, they use the word lupus. On other days, they say mixed connective tissue disease—an overlapping autoimmune disorder. I often don’t have the energy to make a cohesive, ever-unfolding narrative—even to myself.
Susan Sontag gifted us with her analysis of how metaphors for illness, primarily cancer and AIDS, imbue meaning upon the person inflected. She rebuffed the use of metaphor—ironically creating the metaphor, the kingdom of illness—and argued that we should stare the disease straight in the face. For diseases like cancer and AIDs, which are diseases oft shrouded with shame, the Coventry of metaphor lives as mechanisms to make suffering more bearable for the onlooker, not those living inside the disease. This analysis might be accurate for illnesses like cancer and AIDs, which have experienced broader social conversation and received millions, if not billions, of dollars in research. Meanwhile, I find myself desperately grabbing for metaphors because, without them, I fear the nebulous symptoms that inhabit my body will remain unseen—unbelieved. Without them, how can I get you to understand even a sliver of my experience?
Recently, packing up boxes as I prepare to move my life—this body—across the country, it became apparent that my bookshelf contains a not-so-small section of chronic illness memoirs. Almost none purchased by me. All are by cis-, well-educated, white women—a group I also mostly belong to. I pick up each book one by one to assess its worthiness of taking up space in the moving van. I have read every last one.
The genre of the chronic illness memoir, a subset of the now famed “sick lit,” is neither new nor in short supply. Endless listicles outline the top memoirs for chronic illness, cancer, mental illness, and end-of-life. This phenomenon is said to have taken off around the early 2000s, and as I lay out the books on my dining room floor, I find myself putting them in chronological order. The first is You Don’t Look Sick!, the 2005 memoir written by patient Joy Selak and physician Steven Overman, a tale of the three stages of chronic illness: getting sick, being sick, and living well. Bought for me by a well-meaning college professor’s spouse, the book is basically a how-to for getting doctors to listen to you. ( I hear there is a newer addition that includes later stages: grief and acceptance. I don’t mind that it hasn’t reached my shelf.) Sarah Manguso’s Two Kinds of Decay followed, which was gifted to me because, like her, many of the most prominent neurological symptoms developed during college. There are a few that are of the self-published variety and a few of the spiritual variety. And then there are the memoirs of the last few years, given in response to various surgeries, treatments, and medical crises. These are the memoirs I find the most interesting.
These newer memoirs don’t hold the long desired linear arc of “symptoms, diagnosis, treatment.” Instead, they articulate the ambiguity of living within symptoms that, for me, exist like shapeshifters inside my body. At an anecdotal glance, these more modern memoirs appear to have popped up around 2019, presenting a new style of chronic illness storytelling. These are no longer only narratives about illness. Yes, the details of embodiment are still there — the individual experience of feeling betrayed by a body, the symptoms, the procedures, the emotional response. But entwined in these personal accounts are socio-political histories of illness and being ill. These stories have become framed within broader histories of medical advancement and gendered and racial histories of symptoms being believed or dismissed.
Anne Boyer’s Pulitzer-winning The Undying stands as a prime example. She weaves together a non-linear narrative (similar to how living between symptoms, illness. and treatment does not always follow a linear arc) of her illness alongside an analysis of what it means to be identified as a patient within the context of her cancer treatment and subsequent chronic pain. She strings together lore and history into solemn, melodic prose, writing of Greek poets sleeping in sacred places in hopes of divine intervention and World War II bombs that resulted in chemotherapy drugs. Together, they show a broader human urge to understand the bodies we live in, especially when they falter. At one point, Boyer writes, “The history of illness is not the history of the medicine — it is the history of the world — and the history of having a body could well be the history of what is done to most of us in the interest of a few.”
I read Boyer at the beginning of what would become a total of four surgeries on my right leg that started with some wayward lymph nodes and ended with a total reconstruction of the hip joint to remove necrotic bone and tissue. I thought of her words, lying there with an epidural pumping dilaudid straight to the surgical site — a whole history of humanity in these incisions. Boyer intertwined these narratives so tightly that to ignore the social and political histories of pain and becoming a patient she outlines would also be to misunderstand her experience.
Each symptom feels like a glitch in a system. For a moment, my body bends itself around a different structure of time and existence.
Megan O’Rouke, in her memoir The Invisible Kingdom, does similar work in unraveling her story of unexplained chronic illness within a telling of the medical world’s discovery of and difficulty in treating autoimmune diseases within the “optimization” of health care. O’Rouke describes with deep vulnerability the impact of explaining the overwhelming fatigue and brain fog to her doctors, only to be met with blank stares. “Our system is great if you need surgery,” O’Rouke recalls telling her husband. “But when you are suffering day in and out, it feels terrible to go to the doctor’s office and barely be spoken to.” It’s in these words O’Rouke describes that when a person steps into a doctor’s office, they are not a patient but a diagnosis. The focus is the disease. And if that disease is nebulous, the system has nothing to offer.
O’Rouke complicates the story by illuminating a more systemic narrative. She teases a history of the 1970s rise of the “managed care” model that divided medical specialties into silos and allowed insurance companies to dictate patient visit lengths by determining the monetary value of that visit (this is why your visit is almost always 15 minutes). She writes a careful analysis of the systemic gender and racial discrimination that many women and women of color experience when seeking medical care for hard-to-describe or diagnosed symptoms being disregarded as tied to the financial optimization of the managed care model. “So the truth universally acknowledged among the chronically ill,” writes O’Rouke, “that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”
In reading her words, I recall trying to explain my difficulty with my short-term memory and word recall to my doctor as they stared at the computer screen writing notes. All I received was a gentle mumble, “Yes, many patients experience this. It’s difficult to manage.” Often, this came with a referral to see a mental health therapist. (As a mental health therapist, I am all for talk therapy, but therapy will not fix brain fog). At the heart of O’Rourke’s memoir is how hysteria remains alive and well in the medical system. While the health care system claims to know that the uterus does not wander, the same dismissal for nebulous symptoms without clear explanation remains.
In the last three years alone, multiple chart-topping books have all, to varying degrees of success, written into existence their experiences of illness inside a social and historical framework. Tessa Miller, in her book What Doesn’t Kill You: A Life With Chronic Illness, makes that point explicit when she writes in the second chapter, “This is the part of the book where I can imagine the Amazon reviews: “Gee, I was with her until she got all political.” Emily Wells’s A Matter of Appearances masterfully explores the idiosyncratic experience of pain within a cultural history of pain. Sarah Ramey provides a tongue-in-cheek reflection on the social rules of living with unexplained chronic illness in her The Ladies Handbook for Her Mysterious Illness. This move to frame one’s experience of illness within a socio-political history at once appears to be driving home the classic feminist mantra that the personal is political while also serving as a means to legitimize their experiences as sick women.
These memoirs remind me of the multitude of decisions I made and the decisions made for me to keep this body going. I quickly enrolled in graduate school at 21 to stay on my parents’ health insurance. Obama Care, where the age limit was raised to 26 and no longer stipulated enrollment at a college to keep health insurance, had not yet been enacted. Or, when living in an unexpanded Medicaid state, I received a waiver for the $95 penalty for not having insurance as I neither qualified for state healthcare nor could afford the marketplace options. That was the year of a lot of medical debt. I think of the early pandemic when Trump made scientifically unsubstantiated claims that resulted in shortages of hydroxychloroquine, a drug I had been on for 12 years. I had to go off this medication for six weeks until the supply caught back up. Honestly, I had always wondered if it was helping my symptoms and learned quickly how stiff my hands could become. Even now, as I venture back onto methotrexate, a medication to treat a myriad of autoimmune conditions, I wonder if I will have difficulty accessing it, like the many women living in a post-Roe world with trigger-ban states.
These memoirs point out how the story and experience of chronic illness are, again, to quote Boyd, “a story of human history.” Our bodies, our experiences, are inextricably woven into the social and political fabric. And these are the stories—the cis-white, well-educated women—that get to be written, published, and reach the top of the best-seller lists.
There is the story I tell the doctor, my lover, my friends. I regularly shape my story to highlight or overlook certain moments. I am always asking if I should simplify the telling—turn the eight surgeries over five years into three, let the amorphous diagnoses just be the recognizable one—or lay it all out there like a medical chart.
Each symptom feels like a glitch in a system. For a moment, my body bends itself around a different structure of time and existence. Migraines sweep in and steal days and weeks. Swollen joints and fatigue make it hard to focus on the conversation, the tv show; the book in front of me. I don’t know where my brain has gone. I had a partner who once told me about glitches in literature. Where the story, the writing, breaks. But there is no acknowledgment on the writer’s part. The story just continues on — though nothing has happened. My brain, in many ways, has taken a similar approach to recapturing time. In literature, these glitches allow for an acknowledgment, possibly a normalization, of disruption within storytelling. These memoirs, in many ways, feel like an exploration of those interruptions, those glitches. They normalize the fallibility of the body. They normalize the difficulty in understanding the lived experience of the body, especially when it intersects with illness.
These memoirs are not universal, and neither are they trying to be. The subjectivity and reflection of the author define the genre itself. These women have etched their experiences of pain, of hope lost and hope regained — their experiences of disbelief — onto pages for others like me to pick up and find a thread of camaraderie. These women acknowledge the gaps in their stories. They acknowledge the glitches in their understanding. They see their lives as essential to a large human narrative. Sitting on my dining room floor, surrounded by these books, I feel we are all sitting in the same support group. And in their experiences, I find resonance.
So, I will continue to shape and reshape my own story. I will shape my story to increase the chances that my symptoms are believed not just by the doctors but by you or my friends or my lover. I will shape my story to increase the chances that I will not be pitied. I will shape my story so that when I lay in bed at night, I feel like I can understand my own body, at least a little.