Why I Wrote a New Book to Give Voice to Chronic Pain Sufferers
Aside from the difficulty in diagnosing vague and mysterious autoimmune conditions, I found that one of the most challenging aspects of my profession as a rheumatologist was that every single patient was in chronic pain. Here, I found a gaping hole in my education and training during medical school and residency. Nobody had actually taught me how to interact with and treat a patient with chronic pain. None of my professors or mentors mentioned the holistic and comprehensive care of a patient with chronic pain. There was no lecture on “chronic pain 101” or “unique needs of chronic pain sufferers.”
When I first started out in private practice after completing my rheumatology fellowship, I was on my own and had a sense that no matter how hard I tried to respond correctly to patients, some of them could still be unhappy with me or disappointed in my answers. They weren’t satisfied with all their labs coming back normal and why their ANA titer was still positive, and they were frustrated that they had been referred to see multiple specialists and still didn’t have an explanation for why they experienced all their mysterious symptoms.
Our understanding of pain is behind
Jennifer Kahn previously wrote a New York Times article in January 2025 titled “Chronic Pain Is a Hidden Epidemic. It’s Time for a Revolution.” which underscores the chronic pain crisis. She says that “our understanding of pain, and especially chronic pain, is far behind where it should be. We don’t know what causes a person with an injury to develop chronic pain, or why it happens in some people and not others, or why it happens more often in women. At a genetic and cellular level, we don’t know which systems get out of whack, or why, or how to fix them.”1
In my interviews with hundreds of chronic pain patients, I felt exactly like an anthropologist doing field work, collecting data, and making observations about a group of humans that very few people understood or even acknowledged on a day-to-day basis. I had to learn a new way of thinking about my patients, a new way of speaking more gently and compassionately, a new way to enter their world completely.
Chronic pain affects every aspect of a person's life
In 2016, an estimated 20% of Americans had chronic pain that markedly worsened their life and raised healthcare costs.2 Chronic pain is known to affect every aspect of a person’s life--physical, emotional, social, and financial—-and is becoming a greater public health crisis that deserves more attention and research. From my patients’ stories, I learned how to “speak chronic pain” and saw the issues that were most important to them. I hope to become a voice for these patients who often feel invisible and forgotten, to raise awareness and reduce the stigma surrounding chronic pain patients.
Showing patients that "I see you. I hear you. I’m not living in your shoes, but I can try to see things from your perspective. I can’t feel your pain the way you feel it, but I can try my best to empathize and understand how your pain affects every part of how you live” means so much to them.
Reestablishing a “shared reality” helps restore trust and understanding in a relationship.
Those living in chronic pain teach us lessons about the healthcare system
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. Perhaps one day we can truly understand the nature of where these conditions originate from and how to stop their progression.
Through my book, my hope is to give more of a voice to patients living with chronic pain and to remove any stigma that they are facing in society. Chronic pain patients truly feel invisible and unseen. They often look normal from the outside but have a torrent of pain and suffering on the inside. They often don’t have proper social support or resources to help them, and they don’t feel understood in their journey.
“To be able to understand people and be present for them in their experience—that’s the most important thing in the world,” therapist and author Mary Pipher once said.3 Chronic pain exists everywhere around us-—we have to start seeing these invisible people around us, acknowledge what they’re going through, join their crusade, and cheer them on.
My new book is called Stories of Chronic Pain: Living with Arthritis and Autoimmune Diseases
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
Synopsis of book: 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.
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