Stories of Chronic Pain: Living with Arthritis and Autoimmune Diseases (Arthritis Roadmaps)

A rheumatologist explores the psychological and physical realities of living with arthritis and autoimmune diseases through anonymous patient stories, examining themes of diagnosis, relationships, and healthcare system failures. Through her interviews with hundreds of chronic pain patients, she illustrates the crisis of these invisible conditions. This book offers a look into the secret inner lives of chronic pain patients and for anyone seeking to understand them better.

Table of Contents

Chapter 1: The Purpose of Pain

Chapter 2: Finding a Diagnosis

Chapter 3: How Did This Happen to Me?

Chapter 4: Daily Life and Relationships

Chapter 5: Chronic Fatigue

Chapter 6: Work and Disability

Chapter 7: Treatments and the Hope of a Cure

Chapter 8: Seeking an Advocate

Epilogue: Ending an Era of Invisibility

Quotes from the Book

Arthritis and chronic pain seem to change the “shared reality” that often exists between people, leading to deep disconnect and misunderstanding. Psychologists identify “shared reality” as a key component of close relationships. Shared reality is the subjective experience of sharing an inner state—a thought, feeling, or concern—with another person, and having similar beliefs about life and how it should function.

The human mind tries to construct a meaningful story and narrative to make sense of our experiences in a chaotic world. In identifying a clear beginning and starting point to their condition, patients hope to find an answer to its eventual resolution and ending. Being diagnosed with a chronic illness is enduring a narrative crisis—something happened so that your old life story no longer makes sense. Autoimmune diseases don’t come with a clear beginning, middle, or end.

Chronic pain patients, more than any other population of patients, reveal what is weakest and most broken about our current healthcare system. The medical profession often fails to see a patient holistically for his or her complete story and listen to both a patient’s emotional and spiritual experience as well as treating the physical symptoms.

About the Author

Donica Liu Baker is a rheumatologist in St. Louis, Missouri. Her other books include The Rheumatoid Arthritis Roadmap, Psalms for a Season of Grief, and several children's books that help kids understand the pain and fatigue of arthritis.