A revealing account of how families adapt to living with a chronically ill child What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion. The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness—from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives. Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.

Jacinta Parsons was in her twenties when she first began to feel unwell - the kind of unwell that didn't go away. Doctors couldn't explain why, and Jacinta wondered if it might be in her head. But 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, but knowing she had Crohn's disease wouldn't stop her life from spiralling into a big mess of doctors, hospitals and medical disasters. With chronic illness her constant companion, she had to learn how to function in a world set up for the well. 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.

This book is a combination of two books written about Wegener's Granulomatosis. "In the Shadow of Death" contains an account of the diagnosis and treatment of a rare disease by the author. "A Flicker of Hope" contains poems and photographs that express the pain the author went through as she came to terms with the disease. Updated 2nd edition with Tales from the Bed.

"Light in the Shadows" is for people struggling with a life-threatening illness. These meditations cover some of the most important emotional and spiritual lessons for people in this difficult situation. This book is about finding hope in hopeless situations and living a meaningful life while considering the possibility of death.

The Routledge History of Disease draws on innovative scholarship in the history of medicine to explore the challenges involved in writing about health and disease throughout the past and across the globe, presenting a varied range of case studies and perspectives on the patterns, technologies and narratives of disease that can be identified in the past and that continue to influence our present. Organized thematically, chapters examine particular forms and conceptualizations of disease, covering subjects from leprosy in medieval Europe and cancer screening practices in twentieth-century USA to the ayurvedic tradition in ancient India and the pioneering studies of mental illness that took place in nineteenth-century Paris, as well as discussing the various sources and methods that can be used to understand the social and cultural contexts of disease. Chapter 24 of this book is freely available as a downloadable Open Access PDF under a Creative Commons Attribution-Non Commercial-No Derivatives 3.0 license. https://www.routledgehandbooks.com/doi/10.4324/9781315543420.ch24

One man's journey through COVID and cancer, finding a life of greater clarity and purpose as he holds fast to his faith in God.

This volume is a result of four days in July 2005, where historians, health economists, medical doctors and nurses, anthropologists, writers, sociologists and many more travelled to Oxford, England for the fourth annual 'Making Sense of Health, Illness and Disease' conference organised by Inter-Disciplinary.Net.

A college student's education turned into a crash course in investigating diagnoses and scaling back life plans after crushing exhaustion, cognitive difficulties, and other symptoms developed overnight. Numerous doctors and treatments failed, but she rebuilt her life and learned seven lessons that everyone with a chronic illness should know.