Unwell Women: Misdiagnosis and Myth in a Man-Made World


Elinor Cleghorn - 2021
     Elinor Cleghorn became an unwell woman ten years ago. She was diagnosed with an autoimmune disease after a long period of being told her symptoms were anything from psychosomatic to a possible pregnancy. As Elinor learned to live with her unpredictable disease she turned to history for answers, and found an enraging legacy of suffering, mystification, and misdiagnosis.In Unwell Women, Elinor Cleghorn traces the almost unbelievable history of how medicine has failed women by treating their bodies as alien and other, often to perilous effect. The result is an authoritative and groundbreaking exploration of the relationship between women and medical practice, from the wandering womb of Ancient Greece to the rise of witch trials across Europe, and from the dawn of hysteria as a catchall for difficult-to-diagnose disorders to the first forays into autoimmunity and the shifting understanding of hormones, menstruation, menopause, and conditions like endometriosis.Packed with character studies and case histories of women who have suffered, challenged, and rewritten medical orthodoxy--and the men who controlled their fate--this is a revolutionary examination of the relationship between women, illness, and medicine. With these case histories, Elinor pays homage to the women who suffered so strides could be made, and shows how being unwell has become normalized in society and culture, where women have long been distrusted as reliable narrators of their own bodies and pain. But the time for real change is long overdue: answers reside in the body, in the testimonies of unwell women--and their lives depend on medicine learning to listen.

Bellevue: Three Centuries of Medicine and Mayhem at America's Most Storied Hospital


David M. Oshinsky - 2016
    From its origins in 1738 as an almshouse and pesthouse, Bellevue today is a revered public hospital bringing first-class care to anyone in need. With its diverse, ailing, and unprotesting patient population, the hospital was a natural laboratory for the nation's first clinical research. It treated tens of thousands of Civil War soldiers, launched the first civilian ambulance corps and the first nursing school for women, pioneered medical photography and psychiatric treatment, and spurred New York City to establish the country's first official Board of Health. As medical technology advanced, "voluntary" hospitals began to seek out patients willing to pay for their care. For charity cases, it was left to Bellevue to fill the void. The latter decades of the twentieth century brought rampant crime, drug addiction, and homelessness to the nation's struggling cities problems that called a public hospital's very survival into question. It took the AIDS crisis to cement Bellevue's enduring place as New York's ultimate safety net, the iconic hospital of last resort.

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

The Speckled Monster: A Historical Tale of Battling Smallpox


Jennifer Lee Carrell - 2003
    After barely surviving the agony of smallpox themselves, they flouted eighteenth-century medicine by borrowing folk knowledge from African slaves and Eastern women in frantic bids to protect their children. From their heroic struggles stems the modern science of immunology as well as the vaccinations that remain our only hope should the disease ever be unleashed again.Jennifer Lee Carrell transports readers back to the early eighteenth century to tell the tales of Lady Mary Wortley Montagu and Dr. Zabdiel Boylston, two iconoclastic figures who helped save London and Boston from the deadliest disease mankind has known.

And the Band Played On: Politics, People, and the AIDS Epidemic


Randy Shilts - 1987
    America faced a troubling question: What happened? How was this epidemic allowed to spread so far before it was taken seriously? In answering these questions, Shilts weaves the disparate threads into a coherent story, pinning down every evasion and contradiction at the highest levels of the medical, political, and media establishments. Shilts shows that the epidemic spread wildly because the federal government put budget ahead of the nation's welfare; health authorities placed political expediency before the public health; and scientists were often more concerned with international prestige than saving lives. Against this backdrop, Shilts tells the heroic stories of individuals in science and politics, public health and the gay community, who struggled to alert the nation to the enormity of the danger it faced. And the Band Played On is both a tribute to these heroic people and a stinging indictment of the institutions that failed the nation so badly.

Bad Blood: The Tuskegee Syphilis Experiment


James H. Jones - 1981
    The Tuskegee Study had nothing to do with treatment. Its purpose was to trace the spontaneous evolution of the disease in order to learn how syphilis affected black subjects.The men were not told they had syphilis; they were not warned about what the disease might do to them; and, with the exception of a smattering of medication during the first few months, they were not given health care. Instead of the powerful drugs they required, they were given aspirin for their aches and pains. Health officials systematically deceived the men into believing they were patients in a government study of “bad blood”, a catch-all phrase black sharecroppers used to describe a host of illnesses. At the end of this 40 year deathwatch, more than 100 men had died from syphilis or related complications.“Bad Blood” provides compelling answers to the question of how such a tragedy could have been allowed to occur. Tracing the evolution of medical ethics and the nature of decision making in bureaucracies, Jones attempted to show that the Tuskegee Study was not, in fact, an aberration, but a logical outgrowth of race relations and medical practice in the United States.Now, in this revised edition of “Bad Blood”, Jones traces the tragic consequences of the Tuskegee Study over the last decade. A new introduction explains why the Tuskegee Study has become a symbol of black oppression and a metaphor for medical neglect, inspiring a prize-winning play, a Nova special, and a motion picture. A new concluding chapter shows how the black community's wide-spread anger and distrust caused by the Tuskegee Study has hampered efforts by health officials to combat AIDS in the black community. “Bad Blood” was nominated for the Pulitzer Prize and was one of the “N.Y. Times” 12 best books of the year.

Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck


Adam Cohen - 2016
    Bell ruling made government sterilization of "undesirable" citizens the law of the land. New York Times bestselling author Adam Cohen tells the story in Imbeciles of one of the darkest moments in the American legal tradition: the Supreme Court's decision to champion eugenic sterilization for the greater good of the country. In 1927, when the nation was caught up in eugenic fervor, the justices allowed Virginia to sterilize Carrie Buck, a perfectly normal young woman, for being an "imbecile." It is a story with many villains, from the superintendent of the Dickensian Virginia Colony for Epileptics and Feebleminded who chose Carrie for sterilization to the former Missouri agriculture professor and Nazi sympathizer who was the nation's leading advocate for eugenic sterilization. But the most troubling actors of all were the eight Supreme Court justices who were in the majority--including William Howard Taft, the former president; Louis Brandeis, the legendary progressive; and Oliver Wendell Holmes, Jr., America's most esteemed justice, who wrote the decision urging the nation to embark on a program of mass eugenic sterilization

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick


Maya Dusenbery - 2018
    In addition to offering a clear-eyed explanation of the root causes of this insidious and entrenched bias and laying out its effects, she suggests concrete steps we can take to cure it.

Vaccinated: One Man's Quest to Defeat the World's Deadliest Diseases


Paul A. Offit - 2007
    But Maurice Hilleman came close. Maurice Hilleman is the father of modern vaccines. Chief among his accomplishments are nine vaccines that practically every child gets, rendering formerly deadly diseases — including mumps, rubella, and measles — nearly forgotten. Author Paul A. Offit's rich and lively narrative details Hilleman's research and experiences as the basis for a larger exploration of the development of vaccines, covering two hundred years of medical history and traveling across the globe in the process. The history of vaccines necessarily brings with it a cautionary message, as they have come under assault from those insisting they do more harm than good. Paul Offit clearly and compellingly rebuts these arguments, and, by demonstrating how much the work of Hilleman and others has gained for humanity, shows us how much we have to lose.

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.

The Lives They Left Behind: Suitcases from a State Hospital Attic


Darby Penney - 2008
     It is a remarkable portrait, too, of the life of a psychiatric asylum--the sort of community in which, for better and for worse, hundreds of thousands of people lived out their lives.More than four hundred abandoned suitcases filled with patients’ belongings were found when Willard Psychiatric Center closed in 1995 after 125 years of operation. They are skillfully examined here and compared to the written record to create a moving—and devastating—group portrait of twentieth-century American psychiatric care.

Illness as Metaphor and AIDS and its Metaphors


Susan Sontag - 1989
    By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is--just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment and, it is highly curable, if good treatment is followed.Almost a decade later, with the outbreak of a new, stigmatized disease replete with mystifications and punitive metaphors, Sontag wrote a sequel to Illness as Metaphor, extending the argument of the earlier book to the AIDS pandemic.These two essays now published together, Illness as Metaphor and AIDS and Its Metaphors, have been translated into many languages and continue to have an enormous influence on the thinking of medical professionals and, above all, on the lives of many thousands of patients and caregivers.

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.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present


Harriet A. Washington - 2007
    Starting with the earliest encounters between black Americans and Western medical researchers and the racist pseudoscience that resulted, it details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge—a tradition that continues today within some black populations. It reveals how blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of blacks, and the view that they were biologically inferior, oversexed, and unfit for adult responsibilities. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions.The product of years of prodigious research into medical journals and experimental reports long undisturbed, Medical Apartheid reveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused black Americans to view researchers—and indeed the whole medical establishment—with such deep distrust. No one concerned with issues of public health and racial justice can afford not to read Medical Apartheid, a masterful book that will stir up both controversy and long-needed debate.

Twelve Patients: Life and Death at Bellevue Hospital


Eric Manheimer - 2012
    Dr. Manheimer describes the plights of twelve very different patients--from dignitaries at the nearby UN, to supermax prisoners at Riker's Island, to illegal immigrants, and Wall Street tycoons.Manheimer was not only the medical director of the country's oldest public hospital for over 13 years, but he was also a patient. As the book unfolds, the narrator is diagnosed with cancer, and he is forced to wrestle with the end of his own life even as he struggles to save the lives of others.