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The Elusive Body: Patients, Doctors, and the Diagnosis Crisis

by Alexandra Sifferlin

When illness has no name

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Hardcover New English

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AlbakiReads Editorial

When illness has no name

Alexandra Sifferlin’s investigation examines the gap between experiencing symptoms and receiving a diagnosis in the American healthcare system. Patient accounts of seeking explanations sit alongside doctors’ efforts to solve difficult cases and research into the diagnostic process. A key thread is the National Institutes of Health’s Undiagnosed Diseases Network, whose clinics bring physicians and researchers together to investigate cases that have resisted diagnosis. The book also considers how systemic barriers, including insurance bureaucracy, shape that work. Across these strands, diagnosis emerges not simply as a medical label but as a point of access to treatment options, financial support, and community.

Good fit for readers who enjoy

  • Readers interested in patient experiences with undiagnosed illness
  • Readers curious about medical diagnosis and the work of physicians and researchers
  • Readers exploring structural challenges in the American healthcare system

Themes

Undiagnosed illnessPatient-doctor relationshipsMedical research and diagnosisHealthcare-system barriers

Based on publisher information and book metadata.

Book overview

"Engaging and illuminating."
--Jerome Groopman, The New York Review of Books

"I found Ms. Sifferlin's book entertaining, enlightening, and in addition timely--a book mindful of science in this era when crackpot notions about public health and medicine are routinely issued from on high."
--Tracy Kidder, Pulitzer Prize-winning author of Mountains Beyond Mountains

A compelling, necessary, and timely investigation into the diagnosis crisis in the American healthcare system, from the patients living with undiagnosed illnesses, to the doctors searching for answers, and what their quests reveal about our flawed medical system


Millions of Americans live with conditions that elude diagnosis, often navigating a healthcare system that fails to recognize or effectively address their suffering. Journalist Alexandra Sifferlin has spent years investigating the diagnosis crisis in America--what it means to live without an accurate diagnosis and how both medical and patient communities are working to improve the diagnostic process. The National Institutes of Health's Undiagnosed Diseases Network, a series of clinics of last resort where physicians and researchers work tirelessly to solve some of medicine's most confounding cases, is at the forefront of change, showing what's possible when healthcare providers and scientists are freed from the bureaucracy of a system beholden to insurance companies, and encouraged to work together with the aim of solving some of medicine's most perplexing mysteries.

A correct diagnosis is more than a label; it's a lifeline that opens doors to treatment options, financial support, and an understanding community. Weaving the profound, maddening, and uplifting stories of patients seeking answers to unexplainable symptoms, the doctors trying to help them, and the latest research on diagnosis, The Elusive Body illuminates the diagnostic journey, revealing why diagnoses matter and how they have the power to transform lives, the medical system, and even society, one case at a time.
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