Lighting Up a Hidden World


Book Description

The onset can be fast and shocking or slow and insidious. It can happen to anyone at any age. A flu, a vaccination, or an infection can be the innocent beginnings to the potentially life-long and disabling illness called myalgic encephalomyelitis (ME), which is more commonly known as chronic fatigue syndrome (CFS) or ME/CFS in North America. In the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by concerned doctors who were witnessing an influx of patients with a mysterious illness. Eventually the CDC labeled the condition “chronic fatigue syndrome” which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with international experts that ME/CFS is a serious, chronic, multi-system illness. Through artwork, poetry, story-telling, and meticulous research, Lighting Up a Hidden World: CFS and ME takes readers into the fascinating, yet frightening, landscape of ME/CFS. Author Valerie Free shares her personal experiences and delivers illuminating first-hand perspectives from patients, caregivers, journalists, and medical professionals from within the global community in short easy-to-read segments. These stories reveal the disgrace, controversy, and tragedy of worldwide neglect by political and health care systems, leaving ME/CFS research underfunded and millions of people marginalized, sick, and socially unsupported. Lighting Up a Hidden World: CFS and ME advocates for those too ill to speak out, abounds with patient resources, and offers realistic hope for the future. People living with this illness, along with their family and friends, will find compassion and camaraderie in its pages. This book reaches beyond the ME/CFS community exposing the themes of human suffering, resilience, and the need for social change.




Lost Voices


Book Description

In this illuminating book, Dr. Nellie Radomsky explores the complexity of chronic pain in women and evidence for its association with abuse--an issue largely unrecognized by medical practitioners. Modern medical training emphasizes diagnosis and cure, but chronic pain problems often have no identifiable organic cause, and the women who suffer are often not listened to in the doctor’s office. Lost Voices: Women, Chronic Pain, and Abuse addresses how women, by gaining knowledge of the ways the medical culture--and the larger culture--have silenced them, may move into a healing process and learn to speak out. The author encourages women in pain to give voice to their buried experiences and shows them that speaking out about their experiences with abuse and chronic pain can be the first step on the road to healing. The author explores the lost voices of women in pain through stories based on her personal encounters with patients in her practice. These women and their case histories help illustrate the interactions of chronic pain and abuse and the complexity of the doctor-patient relationship. Among the many areas Dr. Radomsky examines are: how the medical culture has silenced women chronic pain in women with a history of abuse the relationship of women’s healing processes and the sense of finding and expressing “lost voices” the doctor-patient relationship and obstacles to healing the limitation of medical models with respect to understanding complex chronic pain issues how acute and chronic pain differ and how physicians and patients alike struggle with this understandingScientific but very readable, Lost Voices assists readers in the search for answers to complex pain problems. It is a hope-full resource for women struggling with chronic pain and personal abuse issues and an enlightening guide for physicians, therapists, and others working with these women. Professionals working in the area of chronic pain, readers involved in feminist issues, and academic physicians interested in medicine as culture will find Lost Voices a revealing book.







Stricken


Book Description

Develop a better understanding of what CFS/CFIDS sufferers are going through!In the 1980s, a strange emerging epidemic baffled doctors in Incline Village, Nevada. Dismissed by the media as “The Yuppie Flu,” Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.In the voices of a South African journalist, a former marathon runner, a teenage girl, a public health activist living on the edge of race and gender, a cancer patient neglected by doctors because of disdain for her chronic illness, and a theologian relearning the art of spiritual empathy, the people who share their stories in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic. Through their distinct points of view, we feel the grief and hope of those stricken with CFIDS and learn of the complex nature of this misunderstood disorder. These are compelling stories about a quiet and baffling epidemic. The first American anthology to contain stories from a diverse range of people with CFIDS, Stricken offers an intimate look at the political and social issues surrounding CFIDS, as told by those who are living through this ordeal. Stricken addresses several issues, such as: why some doctors still do not believe CFIDS is real how the disease is mocked in the media myths about this illness the personal fight for medical or public recognition the skepticism and hope that is felt by the ever-growing number of CFIDS sufferers Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides, accusations of Munchausen Syndrome By Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population. With contributions from Pulitzer-prize nominated writer Susan Griffin, renowned health writer and radio host Gary Null, well-known feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the CFIDS community.




An Evocative Autoethnography of Living Alongside Myalgic Encephalomyelitis (ME)


Book Description

This ground-breaking book explores and explains the day-to-day realities of living long-term with Myalgic Encephalomyelitis (ME). ME is an acquired complex disorder characterised by a variety of symptoms affecting multiple systems of the body. Marked fatigue and weakness, sickness, cognitive dysfunction and symptom flare-up can follow any physical or cognitive exertion. It is estimated that there are 17-24 million sufferers worldwide. The author has lived with moderately severe ME for the last 18 years. Utilising autoethnography as a methodology and drawing on multidisciplinary social science theory, the book tells the story of the author’s own lived experiences of the illness, and how she sought to reimagine a ‘self’ or a life living alongside the illness, that could still be considered a ‘good life’. This autoethnographic book is beautifully and evocatively written. It is a work of scholarship that will be highly accessible to academic and other readers. It is also a comprehensive introduction to autoethnography as a methodology, but it is much more. The images and poetry complement the narrative discussion, and are exemplary as part of an approach that integrates creative work with academic argument. It illuminates the struggles of living with ME and how there can be sanctuary.




When David Lost His Voice


Book Description

"The moment his granddaughter Louise is born, David learns that he has cancer. He would rather keep quiet about his illness, the pain and the end that awaits him-- much to the frustration of the women in his life. They wait, powerless, for the silent but inexorable end"--Page 4 of cover.




The Invisible Kingdom


Book Description

A NEW YORK TIMES BESTSELLER FINALIST FOR THE 2022 NATIONAL BOOK AWARD FOR NONFICTION Named one of the BEST BOOKS OF 2022 by NPR, The New Yorker, Time, and Vogue “Remarkable.” –Andrew Solomon, The New York Times Book Review "At once a rigorous work of scholarship and a radical act of empathy.”—Esquire "A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all.” —The Wall Street Journal "Essential."—The Boston Globe A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color. Blending lyricism and erudition, candor and empathy, O’Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.




Hidden Valley Road


Book Description

#1 NEW YORK TIMES BESTSELLER • OPRAH’S BOOK CLUB PICK • ONE OF GQ's TOP 50 BOOKS OF LITERARY JOURNALISM IN THE 21st CENTURY • The heartrending story of a midcentury American family with twelve children, six of them diagnosed with schizophrenia, that became science's great hope in the quest to understand the disease. "Reads like a medical detective journey and sheds light on a topic so many of us face: mental illness." —Oprah Winfrey Don and Mimi Galvin seemed to be living the American dream. After World War II, Don's work with the Air Force brought them to Colorado, where their twelve children perfectly spanned the baby boom: the oldest born in 1945, the youngest in 1965. In those years, there was an established script for a family like the Galvins--aspiration, hard work, upward mobility, domestic harmony--and they worked hard to play their parts. But behind the scenes was a different story: psychological breakdown, sudden shocking violence, hidden abuse. By the mid-1970s, six of the ten Galvin boys, one after another, were diagnosed as schizophrenic. How could all this happen to one family? What took place inside the house on Hidden Valley Road was so extraordinary that the Galvins became one of the first families to be studied by the National Institute of Mental Health. Their story offers a shadow history of the science of schizophrenia, from the era of institutionalization, lobotomy, and the schizophrenogenic mother to the search for genetic markers for the disease, always amid profound disagreements about the nature of the illness itself. And unbeknownst to the Galvins, samples of their DNA informed decades of genetic research that continues today, offering paths to treatment, prediction, and even eradication of the disease for future generations. With clarity and compassion, bestselling and award-winning author Robert Kolker uncovers one family's unforgettable legacy of suffering, love, and hope.




Understanding and Using Health Experiences


Book Description

Improving patient experience is a global priority for health policy-makers and care providers. The need to look at healthcare delivery through the eyes of patients is widely accepted, but how should it be done? What use can be made of this information, and what evidence is there that such exercises lead to better care? Understanding and Using Health Experiences: Improving patient care examines a broad range of different sources and techniques for gathering and analyzing health experiences. Providing an accessible and pragmatic overview of the diversity and richness of research in the field this book explores the strengths and limitations of different approaches, and assesses what each method can contribute to improving people's experience of illness, and the way that health services are delivered. The book looks at topics such as using focus groups to understand experiences of health and illness, patient surveys, and the internet as a source of information on people's experience. Using clear and engaging examples throughout, the book is accessibly written by experts in social science, health services, and health policy, and will be valuable to postgraduate students, healthcare practitioners, and individuals working in health and social policy, public sector management, and research.




Anxiety: The Missing Stage of Grief


Book Description

With this groundbreaking book, discover the critical connections between anxiety and grief—and learn practical strategies for healing, based on the Kübler-Ross stages model. If you're suffering from anxiety but not sure why, or if you're struggling with loss and looking for solace, Anxiety: The Missing Stage of Grief offers help and answers. As grief expert Claire Bidwell Smith discovered in her own life—and in her practice with her therapy clients—significant loss and unresolved grief are primary underpinnings of anxiety. Using research and real life stories, Smith breaks down the physiology of anxiety, providing a concrete explanation that will help you heal. Starting with the basics questions—“What is anxiety?” and “What is grief?” and moving to concrete approaches such as making amends, taking charge, and retraining your brain, Anxiety takes a big step beyond Elisabeth Kübler-Ross's widely accepted five stages to unpack everything from our age-old fears about mortality to the bare vulnerability a loss can make us feel. With concrete tools and coping strategies for panic attacks, getting a handle on anxious thoughts, and more, Smith bridges these two emotions in a way that is deeply empathetic and profoundly practical.