Challenging Diagnosis

“For anyone who has faced an extended period of not knowing what ails them, diagnostic uncertainty can be profoundly frustrating. We look to medicine for answers, yet even as scientific and clinical progress is made, certainty eludes. Challenging Diagnosis is among the rare histories to confront this double bind. LaBonte treats the history of cystic fibrosis as an eighty-year diagnostic odyssey that has bred as much uncertainty and frustration as it has resolved. Juxtaposed with LaBonte’s own decades-long journey with an uncertain diagnosis, these well-told histories become bounty for reflecting on the potency and limits of biomedicine. After Challenging Diagnosis, physicians and patients might do well to recalibrate their expectations; something far more valuable than certainty lies in this journey.”

“Challenging Diagnosis explores the meaning, scope, and ramifications of diagnostic uncertainty in the US today. In LaBonte’s careful analysis, CF becomes a case study of biomedical failure to research and explain disease prognosis and to adequately respond to the dilemmas created by screening and testing. She illuminates the individual experience of disease and uncertainty, especially people whose suffering remains undiagnosed and untreated and others who carry genetic variants that are not yet the target of medical breakthroughs. LaBonte uses her own experiences with diagnostic uncertainty and complexity to frame this well-written and accessible book. Challenging Diagnosis calls for more research into individual variation and prognosis, more individualized care, and less stigma surrounding symptoms that resist current medical explanation.”

“This engaging book explores the fascinating history of cystic fibrosis. LaBonte uses that history to illustrate an important understanding of the history of medicine—despite the nearly continuous introduction of marvelous new technology into health care, diagnosis and treatment will continue to be fraught with uncertainty.”

“This is a vivid, illuminating study of medical uncertainty, something so many continue to experience even in our time of technically sophisticated medical care. LaBonte’s moving history of a genetic disease, cystic fibrosis, explores the transformation of this disease over the last century with special attention to changing diagnostic protocols. Extremely well written, accessible, and based on deep research, her study shows how elusive and medically vexing a well-known ‘single-gene disorder’ can be. LaBonte herself may or may not have CF—she has one of the most important symptoms, but not other key signs. Her work suggests how critical attention to patient testimonials can be and calls for more systematic attention to them. The author dedicates the book to patients who have faced uncertain diagnosis (which I think must be pretty much everyone). The book is a wonderful contribution to the history of medicine and to our understanding of CF itself as a medical, political, and social phenomenon.”

Michelle LaBonte is assistant professor of history at Purdue University.

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