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Full Description
There is a complex relationship between illness and identity. Missed and Dismissed Voices aims to expose the impact of hidden health problems on the daily lives of a growing number of adults who live with chronic conditions and repeatedly face the challenge of trying to maintain their personal sense of healthiness across the life course.
The book focuses on the meaning and management of both medically diagnosed chronic diseases and medically unexplained physical conditions or syndromes. In each case, people must decide whether to make their private suffering public. The book includes analysis derived from research literature, combined with illness narrative accounts of people in qualitative interviews and blog posts, to create fictional exemplary case studies for each of the chronic conditions examined. The common issues raised in these stories provide important insights into the process by which people manage to adapt to their changing health status and life circumstances. In this book, Alexander Segall, PhD, gives voice to chronically ill people who often have their life stories either missed or dismissed.
Contents
Acknowledgements
Preface
Part One: Illness and Identity
An Exploration
1. Understanding Our Sense of Healthiness
The Mystery of Good Health: Some Initial Observations
The Meaning of Good Health
Alternative Interpretations of Self-Rated Health
Health and Everyday Life
Wounded Storytellers: Personal Accounts of Health and Illness
The Healthy Self: Life Stories We Tell Others
Collective Case Studies: Finding Common Voices in Illness Narratives
2. Maintaining a Healthy Self-Identity
Learning to Live with Chronic Illness
Daily Pain: An Invisible but Constant Companion
The Decision to Disclose: Making Private Suffering Public
Striking a Balance between "Carrying on" and "Giving in"
Preserving One's Personal Sense of Healthiness
Part Two: Living with Medically Diagnosed Chronic Diseases
An Unrelenting Assault on the Body and Self
3. Chronic Disease as a Disruptive Life Event
Biographical Disruption: A Core Concept in the Study of Chronic Illness
Different Levels of Assault: Interruption, Intrusion, and Immersion
Visible and Invisible Aspects of Chronic Illness
The Burden of Invisibility
Challenges Facing These Wounded Storytellers: Being Heard
4. Life Stories about the Invisible Impact of Chronic Disease: Some Missed Voices
Introduction: The Chronic Diseases Selected
Case Study One - Diabetes
A Brief Description of the Disease
The Impact of Diabetes on Everyday Life
A Common Life Story: Jim's Illness Narrative Account
Case Study Two - Inflammatory Bowel Disease (IBD)
A Brief Description of the Disease
The Impact of IBD on Everyday Life
A Common Life Story: Helen's Illness Narrative Account
Shared Storylines: A Summary
Part Three: Living with Medically Unexplained Physical Symptoms
Discounted Stories of Sickness and Suffering
5. Contested Chronic Illnesses: Uncertainty and the Quest for Credibility
Understanding Sickness: The Presence of Disease and the Experience of Illness
Hidden Health Problems that Are Not Only Invisible but Also Do Not Meet the Medical Definition of Disease
Negotiating Contested Terrain: Dealing with Medically Unexplained Symptoms
Adopting the Sick Role: Contending with a Crisis of Credibility and Gaining Legitimacy
Challenges Facing These Wounded Storytellers: Being Heard and Believed
6. Life Stories about Uncertain and Invisible Chronic Illness: Some Dismissed Voices
Introduction: The Chronic Conditions Selected
Case Study Three - Fibromyalgia
A Brief Description of the Illness
The Impact of Fibromyalgia on Everyday Life
A Common Life Story: Janet's Illness Narrative Account
Case Study Four - Chronic Fatigue Syndrome
A Brief Description of the Illness
The Impact of Chronic Fatigue Syndrome on Everyday Life
A Common Life Story: Gail's Illness Narrative Account
Shared Storylines: A Summary
Part Four: The Lifelong Pursuit of Healthiness
Meeting the Challenges
7. Making Sense of Sickness: Explanation and Adaptation
Self-Management of Hidden Chronic Health Problems
Ongoing Chronic Illness-Related Work, Everyday Life Work, and Biographical Work
Repairing a "Spoiled" Social Identity and Reconstructing a Healthy Self
Supportive Social Networks and the Health of Older Adults
Managing Chronic Illness in Later Life
8. Health across the Life Course
A Life Course Perspective on Chronic Illness
Advancing Age and Declining Health: Double Jeopardy
Maintaining a Personal Sense of Healthiness as We Age: A Will to Health
Living Well with Hidden Chronic Health Problems: The Quality of Later Life
Healthy Aging: Some Concluding Thoughts
Notes
References
Index
