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.

Unseen: The secret world of chronic illness


Jacinta Parsons - 2020
    Doctors couldn’t explain why, and Jacinta wondered if it might be in her head. She could barely function, was frequently unable to eat or get out of bed for days, and gradually turned into a shadow of herself. Eventually she got a diagnosis: Crohn’s disease. But knowing this wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters.What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.

The Empathy Exams


Leslie Jamison - 2014
    She draws from her own experiences of illness and bodily injury to engage in an exploration that extends far beyond her life, spanning wide-ranging territory—from poverty tourism to phantom diseases, street violence to reality television, illness to incarceration—in its search for a kind of sight shaped by humility and grace.

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.

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."

So Sad Today: Personal Essays


Melissa Broder - 2016
    In the fall of 2012, she went through a harrowing cycle of panic attacks and dread that wouldn't abate for months. So she began @sosadtoday, an anonymous Twitter feed that allowed her to express her darkest feelings, and which quickly gained a dedicated following. In So Sad Today, Broder delves deeper into the existential themes she explores on Twitter, grappling with sex, death, love, low self-esteem, addiction, and the drama of waiting for the universe to text you back. With insights as sharp as her humor, Broder explores—in prose that is both gutsy and beautiful, aggressively colloquial and achingly poetic—questions most of us are afraid to even acknowledge, let alone answer, in order to discover what it really means to be a person in this modern world.

Constellations


Sinéad Gleeson - 2019
    A map, a tracing of connections and a guide to looking at things from different angles. How do you tell the story of life that is no one thing? How do you tell the story of a life in a body, as it goes through sickness, health, motherhood? And how do you tell that story when you are not just a woman but a woman in Ireland? In these powerful and daring essays, Sinead Gleeson does that very thing. In doing so she delves into a range of subjects: art, illness, ghosts, grief, and our very ways of seeing. In writing that is in tradition of some of our finest writers such as Olivia Laing, Maggie O'Farrell, and Maggie Nelson, and yet still in her own spirited, warm voice, Gleeson takes us on a journey that is both personal and yet universal in its resonance.

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.

Phosphorescence: On Awe, Wonder and Things That Sustain You When the World Goes Dark


Julia Baird - 2020
    We know, for example, that there are a few core truths to science of happiness. We know that being kind and altruistic makes us happy, that turning off devices, talking to people, forging relationships, living with meaning and delving into the concerns of others offer our best chance at achieving happiness. But how do we retain happiness? It often slips out of our hands as quickly as we find it. So, when we are exposed to, or learn, good things, how do we continue to burn with them?And more than that, when our world goes dark, when we're overwhelmed by illness or heartbreak, loss or pain, how do we survive, stay alive or even bloom? In the muck and grit of a daily existence full of disappointments and a disturbing lack of control over many of the things that matter most - finite relationships, fragile health, fraying economies, a planet in peril - how do we find, nurture and carry our own inner, living light - a light to ward off the darkness?Absorbing, achingly beautiful, inspiring and deeply moving, Julia Baird has written exactly the book we need for these times.

Pain Woman Takes Your Keys, and Other Essays from a Nervous System


Sonya Huber - 2017
    What about on a scale of spicy to citrus? Is it more like a lava lamp or a mosaic? Pain, though a universal element of human experience, is dimly understood and sometimes barely managed. Pain Woman Takes Your Keys, and Other Essays from a Nervous System is a collection of literary and experimental essays about living with chronic pain. Sonya Huber moves away from a linear narrative to step through the doorway into pain itself, into that strange, unbounded reality. Although the essays are personal in nature, this collection is not a record of the author’s specific condition but an exploration that transcends pain’s airless and constraining world and focuses on its edges from wild and widely ranging angles. Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty.

Girl in the Dark


Anna Lyndsey - 2015
    She was ambitious and worked hard; she had just bought an apartment; she was falling in love. But then she started to develop worrying symptoms: her face felt like it was burning whenever she was in front of the computer. Soon this progressed to an intolerance of fluorescent light, then of sunlight itself. The reaction soon spread to her entire body. Now, when her symptoms are at their worst, she must spend months on end in a blacked-out room, losing herself in audio books and elaborate word games in an attempt to ward off despair. It was during this period she began to write this book.

Challenge Accepted!


Celeste Barber - 2018
    Very, very real. Actor, writer and comedian, Celeste Barber is one very funny woman - not to mention a global social media comedy phenomenon. Amassing over 3 million followers in only 18 months with her hilarious #challengeaccepted pics, she has been dubbed 'Australian Comedy Queen' by ABC Online; voted The Funniest Lady on Instagram; gone on sold-out comedy tours of US and UK; and won herself fans ranging from Tom Ford and Ruby Rose, to Amy Schumer and Dawn French. In the tradition of Tina Fey's Bossypants, Celeste's memoir is part memoir, part comedy routine, part advice manual. Calling out our ridiculous celebrity Instagram culture and the obsession we all seem to have with how we look, Celeste reveals all, including her thoughts on keeping it real and feeling good (instead of worrying about looking good); the secrets to love, friendship, family and marriage (#hothusband); how to deal with life's many challenges, like, well, motherhood, among other things; and how to stay nice in Spanx. Celeste is real, hilarious and the world can't get enough of her.

Life Inside My Mind: 31 Authors Share Their Personal Struggles


Jessica BurkhartCindy L. Rodriguez - 2018
    Millions of people are going through similar things. And many of them are people you know—you know them because they write the books that you’re reading.Life Inside My Mind is an anthology of true-life events from writers of this generation, for this generation. It takes aim at ending the shame of mental illness. With the intention of providing hope to those who are suffering, awareness to those who are witnessing a friend or family member battle mental illness, and opening the floodgates to conversations about mental illness, Side Effects tackles the stigmas around mental illness in a new and refreshing way.

The Man Who Couldn't Stop


David Adam - 2014
    In this captivating fusion of science, history and personal memoir, writer David Adam explores the weird thoughts that exist within every mind, and how they drive millions of us towards obsessions and compulsions.David has suffered from OCD for twenty years, and The Man Who Couldn’t Stop is his unflinchingly honest attempt to understand the condition and his experiences. What might lead an Ethiopian schoolgirl to eat a wall of her house, piece by piece; or a pair of brothers to die beneath an avalanche of household junk that they had compulsively hoarded? At what point does a harmless idea, a snowflake in a clear summer sky, become a blinding blizzard of unwanted thoughts? Drawing on the latest research on the brain, as well as historical accounts of patients and their treatments, this is a book that will challenge the way you think about what is normal, and what is mental illness.Told with fierce clarity, humour and urgent lyricism, this extraordinary book is both the haunting story of a personal nightmare, and a fascinating doorway into the darkest corners of our minds.

The Collected Schizophrenias: Essays


Esmé Weijun Wang - 2019
    Schizophrenia is not a single unifying diagnosis, and Esme Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalisation to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.