Prognosis: A Memoir of My Brain


Sarah Vallance - 2019
    The next morning, things take a sharp turn as she’s led from work to the emergency room. By the end of the week, a neurologist delivers a devastating prognosis: Sarah suffered a traumatic brain injury that has caused her IQ to plummet, with no hope of recovery. Her brain has irrevocably changed.Afraid of judgment and deemed no longer fit for work, Sarah isolates herself from the outside world. She spends months at home, with her dogs as her only source of companionship, battling a personality she no longer recognizes and her shock and rage over losing simple functions she’d taken for granted. Her life is consumed by fear and shame until a chance encounter gives Sarah hope that her brain can heal. That conversation lights a small flame of determination, and Sarah begins to push back, painstakingly reteaching herself to read and write, and eventually reentering the workforce and a new, if unpredictable, life.In this highly intimate account of devastation and renewal, Sarah pulls back the curtain on life with traumatic brain injury, an affliction where the wounds are invisible and the lasting effects are often misunderstood. Over years of frustrating setbacks and uncertain triumphs, Sarah comes to terms with her disability and finds love with a woman who helps her embrace a new, accepting sense of self.

Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know


Andrew S. Cook - 2012
    Dr. Cook explains why so many patients are misunderstood and misdiagnosed, why most endometriosis surgery is done so poorly, the principles and correct techniques for effective endometriosis surgery, and how to find the best doctors and healthcare providers. This book embraces a women's perspective and provides much-needed support for women who have suffered from the pain of endometriosis. He also explains his comprehensive and successful program for treating endometriosis.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain


Abby Norman - 2018
    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics


Lara Parker - 2020
    But I was getting there. I wanted the world to know that all of this pain I had been feeling…that it was related to my vagina. Thus, Vagina Problems was born. It was a cutesy name. It was my way of taking this pain and saying, “Whatever. I’m here. I have it. It sucks. Let’s talk about it.”In April 2014, Deputy Editorial Director at BuzzFeed Lara Parker opened up to the world in an article on the website: she suffers from endometriosis. And beyond that? She let the whole world know that she wasn’t having any sex, as sex was excruciatingly painful. Less than a year before, she received not only the diagnosis of endometriosis, but also a diagnosis of pelvic floor dysfunction, vulvodynia, vaginismus, and vulvar vestibulitis. Combined, these debilitating conditions have wreaked havoc on her life, causing excruciating pain throughout her body since she was fourteen years old. These are her Vagina Problems. It was five years before Lara learned what was happening to her body. Five years of doctors insisting she just had “bad period cramps,” or implying her pain was psychological. Shamed and stigmatized, Lara fought back against a medical community biased against women and discovered that the ignorance of many doctors about women’s anatomy was damaging more than just her own life. One in ten women have endometriosis and it takes an average of seven years before they receive an accurate diagnosis—or any relief from this incurable illness’ chronic pain. With candid revelations about her vaginal physical therapy, dating as a straight woman without penetrative sex, coping with painful seizures while at the office, diet and wardrobe malfunctions when your vagina hurts all the time, and the depression and anxiety of feeling unloved, Lara tackles it all in Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics with courage, wit, love, and a determination to live her best life."

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

Sick: A Memoir


Porochista Khakpour - 2018
    For most of that time, she didn't know why. All of her trips to the ER and her daily anguish, pain, and lethargy only ever resulted in one question: How could any one person be this sick? Several drug addictions, three major hospitalizations, and over $100,000 later, she finally had a diagnosis: late-stage Lyme disease. Sick is Khakpour's arduous, emotional journey—as a woman, a writer, and a lifelong sufferer of undiagnosed health problems—through the chronic illness that perpetually left her a victim of anxiety, living a life stymied by an unknown condition.Divided by settings, Khakpour guides the reader through her illness by way of the locations that changed her course—New York, LA, New Mexico, and Germany—as she meditates on both the physical and psychological impacts of uncertainty, and the eventual challenge of accepting the diagnosis she had searched for over the course of her adult life. With candor and grace, she examines her subsequent struggles with mental illness, her addiction to the benzodiazepines prescribed by her psychiatrists, and her ever-deteriorating physical health. A story about survival, pain, and transformation, Sick is a candid, illuminating narrative of hope and uncertainty, boldly examining the deep impact of illness on one woman's life.

Sonata: A Memoir of Pain and the Piano


Andrea Avery - 2017
    The heartbreaking story of this mysterious sonata—Schubert’s last, and his most elusive and haunting—is the soundtrack of Andrea's story.Sonata is a breathtaking exploration of a “Janus-head miracle”—Andrea's extraordinary talent and even more extraordinary illness. With no cure for her R.A. possible, Andrea must learn to live with this disease while not letting it define her, even though it leaves its mark on everything around her—family, relationships, even the clothes she wears. And in this riveting account, she never loses her wit, humor, or the raw artistry of a true performer.As the goshawk becomes a source of both devotion and frustration for Helen Macdonald in H is for Hawk, so the piano comes to represent both struggle and salvation for Andrea in her extraordinary debut.

Tender Points


Amy Berkowitz - 2015
    Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores sexual violence, gendered illness, chronic pain, and patriarchy through the lenses of lived experience and pop culture (Twin Peaks, Teenage Mutant Ninja Turtles, noise music, etc.). Teaching Guide (or Book Club Guide) here: bit.ly/2aqJV2X

The Undying


Anne Boyer - 2019
    For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.

Pain and Prejudice: A Call to Arms for Women and Their Bodies


Gabrielle Jackson - 2019
    And many are so, so tired … But women's pain is all too often dismissed, their illnesses misdiagnosed or ignored. In medicine, man is the default human being. Any deviation is atypical, abnormal, deficient.'Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into the disease by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. What began as one issue led Jackson to explore how women - historically and through to the present day - are under-served by the systems that should keep them happy, healthy and informed about their bodies.Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish. The stark reality is that women's pain is not taken as seriously as men's. Women are more likely to be disbelieved and denied treatment than men, even though women are far more likely to be suffering from chronic pain.In a potent blend of personal memoir and polemic, Jackson confronts the private concerns and questions women face regarding their health and medical treatment. Pain and Prejudice, finally, explains how we got here, and where we need to go next.

On Being Ill


Virginia Woolf - 1930
    We cannot quote Shakespeare to describe a headache. We must, Woolf says, invent language to describe pain. And though illness enhances our perceptions, she observes that it reduces self-consciousness; it is "the great confessional." Woolf discusses the cultural taboos associated with illness and explores how illness changes the way we read. Poems clarify and astonish, Shakespeare exudes new brilliance, and so does melodramatic fiction!On Being Ill was published as an individual volume by Hogarth Press in 1930. While other Woolf essays, such as A Room of One’s Own and Three Guineas, were first published by Hogarth as individual volumes and have since been widely available, On Being Ill has been overlooked. The Paris Press edition features original cover art by Woolf’s sister, the painter Vanessa Bell. Hermione Lee’s Introduction discusses this extraordinary work, and explores Woolf’s revelations about poetry, language, and illness.

What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.

My Lovely Wife in the Psych Ward


Mark Lukach - 2017
    They fell in love at eighteen, married at twenty-four, and were living their dream life in San Francisco. When Giulia was twenty-seven, she suffered a terrifying and unexpected psychotic break that landed her in the psych ward for nearly a month. One day she was vibrant and well-adjusted; the next she was delusional and suicidal, convinced that her loved ones were not safe.Eventually, Giulia fully recovered, and the couple had a son. But, soon after Jonas was born, Giulia had another breakdown, and then a third a few years after that. Pushed to the edge of the abyss, everything the couple had once taken for granted was upended.A story of the fragility of the mind, and the tenacity of the human spirit, My Lovely Wife in the Psych Ward is, above all, a love story that raises profound questions: How do we care for the people we love? What and who do we live for? Breathtaking in its candor, radiant with compassion, and written with dazzling lyricism, Lukach’s is an intensely personal odyssey through the harrowing years of his wife’s mental illness, anchored by an abiding devotion to family that will affirm readers’ faith in the power of love.

The Doctor Will See You Now: Recognizing and Treating Endometriosis


Tamer Seckin - 2016
    Instead, it grows outside of the uterus, spreading to organs and nerves in and around the pelvic region. The resulting pain is so physically and emotionally insufferable that it can mercilessly dominate a woman's life. The average woman with endometriosis is twenty-seven years old before she is diagnosed. It is one of the top three causes of female infertility. The pain it emits can affect a woman's career, social life, relationships, sexual activity, sleep, and diet. It is incurable, but highly treatable. Unfortunately, though, it is rarely treated in a timely manner, if at all, because of misdiagnoses and/or a lack of education among those in the medical community.This book gives hope to everyone connected to endometriosis. That includes every woman and young girl who has it, and the women and men in their lives - the mothers, fathers, husbands, children, and friends - who know something is wrong, but do not know what it is or what to do about it. This book is written at a level that everyone with ties to this disease can relate to and understand, but it is also for doctors with good intentions who lack the knowledge of how to diagnose or treat it."The Doctor Will See You Now" is for women determined to let the world know their stories so that every woman with this disease - from the thirteen-year-old girl who is being told that her pain is "part of becoming a woman" to the woman who has been misdiagnosed for decades - knows she is not alone.Yes, her pain is real.No, she is not crazy.Yes, there is hope.