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

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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.

© 2025 Artists Rights Society (ARS), New York / VEGAP, Madrid

320 pages, Hardcover

Published March 31, 2026

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Alexandra Sifferlin

1 book18 followers

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5 stars
27 (38%)
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29 (40%)
3 stars
11 (15%)
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Displaying 1 - 20 of 20 reviews
Profile Image for Peter Tillman.
4,192 reviews492 followers
Want to Read
April 17, 2026
Here's an extended excerpt from The Atlantic:
https://www.theatlantic.com/books/202...
(If this is paywalled, I'd be happy to email a copy to non-subscribers)
Excerpt:
"In her first year of medical school, Diana Cejas discovered a lump in her neck. She went to the student medical center to have it evaluated and was told that it was likely benign. But the lump kept growing, and she returned to her doctors, who reassured her that it was just a large lymph node. One night, following a 36-hour shift in her residency, the lump hurt so much she couldn’t sleep. The next day, after she begged for help, a doctor finally ordered a CT scan. She looked up her results on the hospital computer system. There, on the screen, was a large mass in her neck. It turned out to be cancerous. Even as she had been learning how to correctly diagnose others, she had not been able to get an accurate diagnosis herself."

On the "maybe" list. I think a library copy is likely to become available.
Profile Image for jacey.
19 reviews
January 3, 2026
*ARC- review is solely based on my own thoughts and opinions

📖The Elusive Body by Alexandra Sifferlin
⭐️⭐️⭐️⭐️

This book brings awareness to the medical crisis the world, especially the US, is facing and the different aspects that play a role in it. I was aware of how the medical system works because of my schooling, but The Elusive Body brought up different points that I had not considered. There were also several great examples that solidified the points being made. There were several citations that backed up the authors claims.

I overall really enjoyed this book! It wasn’t the best nonfiction I’ve read because at times it felt a little like I was reading a textbook, but it is definitely in my top favorites list!
Profile Image for Gijs Limonard.
1,430 reviews44 followers
April 5, 2026
3,5 stars; as a practicing physician myself I was really curious as to what angle the author (a non-physician) would take in introducing and fleshing out the concept of diagnosis; she does an admirable job in laying out the process and provides ample examples and patient stories; over- and under-diagnosis get their rightful place and every now and then she ventures into somewhat more philosophical musings on the nature of diagnosis itself; and that's where the outside-looking-in status of the author becomes apparent; a lot of the classic works on doctor's epistemologies are cited (a.o. the excellent How Doctors Think: Clinical Judgment and the Practice of Medicine), but in the end your left with the feeling it is all just a little bit too derivative to provide a new and fresh outlook.
Profile Image for Addison.
381 reviews1 follower
May 13, 2026
I really enjoyed this book and found it well-written and engaging. Sifferlin does a great job of weaving facts and case studies together, and makes some very compelling and nuanced points.
Profile Image for Off Service  Book Recs.
564 reviews34 followers
Review of advance copy received from Netgalley
March 26, 2026
Medicine is a practice, not a perfection for a reason, but the art of diagnosis may be at risk in a unfeeling and corporatized healthcare system. And making a good and correct diagnosis is more than just filling in a billing code - for those suffering from unlabeled constellations of symptoms, a diagnosis can opens doors to treatment options, financial support, and an understanding community. From the offices of family doctors in small-town America, to the simulated patient encounters of renowned medical schools, to the National Institute of Health’s Undiagnosed Diseases Network, journalist Alexandra Sifferlin takes readers through the past, present, and future of that elusive art of diagnosis. In weaving history with the personal stories of patients and physicians, Sifferlin highlights why diagnoses matter, and how they have the power to transform lives, the medical system, and even society, one case at a time.

This was a really excellent book for both laypersons and past and future physicians - I think 'the art of diagnosis' for me was one of those topics that came up in lecture once or twice (and always seemingly before an exam or Boards, so who was really paying careful attention?), so to see a book that delves into WHAT it is, HOW it came to be, and WHY it is so important, particularly in a day and age of blood and computers was really refreshing and validating. I really took the personal stories to heart here, both from patients and physicians - Sifferlin managed to capture the 'think locally, act globally' element of what diagnosis means for individuals, and for a multinational healthcare system beautifully, and I enjoyed going with them on different adventures through doctors offices, academia, presentation halls, hospitals, and even the labs and workplaces of those outside of healthcare.

My one strong complaint with this book - and mind you, I am rating it five stars because I still think it's a fantastic read otherwise - is the authors chapter on artificial intelligence. There was a lot of information about how AI is changing medical education and medical practice, as well as what a future with AI-embedded healthcare could look like, but what the author fails to do is highlight the risks and costs that comes with supporting AI in today's day and age - though they showcase how much 'better' AI is at diagnosis and interpreting data, they fail to really emphasize the danger of AI in healthcare - I have read article after article recently about AI's frequent tendencies to make up data and statistics in reinforcing the prompts it is given, and even stories about how AI 'yes-ands' its way into causing real-life harms to those suffering from illness who use it as a surrogate doctor or therapist. And nowhere does the author even mention in passing the 'real-world' consequences of data centers on the environment - and for some, their physical health, as data centers spring up in neighborhoods, encroaching on natural resources and even the physical/mental health of those living in their vicinity. AI is still an untested and frankly dangerous "tool" that very much has the potential to do much harm, and I think the author did a disservice to readers in giving it such a positive spin.

Overall, this was a thoughtful and well-researched book that shone light on an unappreciated and sometimes forgotten art of medicine that I think will be entertaining and informative for both medical professionals and laypersons. The future of healthcare is rapidly changing, and many of the points regarding diagnosis and discovery in a world with so much data at our fingertips is important to discuss, learn more about, and think critically on, and this book provides a good base on which to start!
Profile Image for EM.
20 reviews1 follower
April 2, 2026
2.75/5

I was excited to read a book on underdiagnosis after reading Suzanne O’Sullivan’s book on overdiagnosis, The Age of Diagnosis, last summer. Between O’Sullivan and Sifferlin, it’s clear we are facing a problem when it comes to diagnostics in medicine.

The strength of Sifferlin’s book is in her research and reporting skills. As described in her notes on sources, years of research went into this book. I feel, though, as if this strength was also a weakness. At times, it felt as if I were reading a book-length news article. The prose was often on the flatter side (past tense abounds, simplistic “ought” and “should” statements close beside), though there was an occasional bright turn of phrase. It is clear that Ms. Sifferlin is a skilled reporter, but narrative non-fiction relies heavily on just that: narrative. Throughout the course of the book, we meet many compelling characters - physicians, patients, advocates, researchers - and I found myself wishing for more. Who were these people beyond their profession or illness? While Sifferlin did give some details, I personally would have preferred a more character-driven narrative as a way to convey the vast amount of information in The Elusive Body. The threads of individual stories did begin to weave together in the last few chapters but the tapestry did not quite come together. The Elusive Body ultimately revealed that the transition from reporter to “book-length author” is underway but not yet complete. To show, not tell, is the key difference in this sort of book. Even if the reader agrees with Ms. Sifferlin’s conclusions about the state of our healthcare system and potential remedies, those conclusions do not have to be explicitly stated. The trick of a good author is to lead you to their conclusions without flatly stating them. I think, though, that with Ms. Sifferlin’s journalistic skills, she will be able to do so successfully in future work.

Ultimately, I would recommend this book to someone who is just beginning their reading journey in medical narrative nonfiction. If you are a regular reader of the genre, it may be an informational read but not necessarily a compelling one. I’m sure I will enjoy Ms. Sifferlin’s next book.

Thank you very much to NetGalley, Viking, and author for the advance copy of this book!
Profile Image for Leah Rachel von Essen.
1,451 reviews181 followers
May 19, 2026
This book about the practice of diagnosis and the need for it to be better was a fascinating addition to my collection on the current state of healthcare. In The Elusive Body: Patients, Doctors, and the Diagnosis Crisis, Alexandra Sifferlin does really interesting work to unpack what the issue with diagnosis really is: why so many people get incorrect ones, the potential costs that can have, and how it might be able to get better.

One of the answers, naturally, is how much of our healthcare system comes down to insurance, which needs a clear diagnostic code for many tests to be justified, making it ideal to jump to the easy answer and stick to it. Various biases also encourage this—the easiest answer is the most likely, but when that's colored with fatphobia, misogyny, or racism, it can do damage. An astonishing 1 in 15 people will, at some point in their lives, have a rare health condition, and yet doctors are often too quick to dismiss the rare entirely. Partially due to time pressure and partially to the lack of hands-on medical education, the physical exam and listening portions of a doctor's visit are becoming lost arts despite being the most crucial pieces of the puzzle according to all data. There's also a marked lack of collaboration between kinds of doctors—even in good systems, your cardiologist rarely talks at any length with your primary care or dermatologist.

Between the need for speed and the pressure to cure, doctors are very uncomfortable with uncertainty and the possibility of being wrong. It's difficult to ever find out if you were wrong about a diagnosis, and few doctors track their cases. But there are many programs out there that demonstrate ways to achieve better diagnosis, and many people who are fighting to get studies like this into medical education so that the next generation can be better at having the right tools and mentalities to get to a good or functional diagnosis, and at being honest and transparent with the patient. This was an interesting deep-dive into a lot of the issues underlying chronic illnesses, rare conditions, and more, and hopefully can be an informative work for doctors and medical pros as well as patients.
Profile Image for Allyson Dyar.
460 reviews59 followers
March 30, 2026
I consider myself fortunate. When my annual blood test (tested each year because I have Type 2 Diabetes) came back with unusual results, my doctor and I wanted answers.

Because I have a background in biology, human anatomy, and physiology, I was able to follow her reasoning for additional tests. I initially went through noninvasive tests including a DEXA (dual x-ray absorptiometry) scan to check for bone density as well as additional more specific blood tests.

Not long after, I had a diagnosis: Monoclonal Gammopathy of Undetermined Significance (MGUS), which is detected in about 3% of the population over fifty. Thankfully, it’s one of the diseases that is simply monitored, so I don’t have to do much except go in for a yearly examination.

I feel lucky that I was able to get a diagnosis in a reasonable amount of time, but not everyone is as fortunate. This is the underlying thesis of the book, “The Elusive Body: Patients, Doctors, and the Diagnosis Crisis”—we go to doctors to understand why we are sick and what can be done for us.

Unfortunately, because the human body is so complex, and despite all the knowledge we’ve gained over the last few decades, sometimes a satisfactory diagnosis is still hard to obtain. Author Alexandria Sifferlin deftly explains how a doctor approaches a patient to render a diagnosis, as well as show the other side of the diagnosis dilemma, when a patient who has undergone numerous inconclusive tests still doesn’t have an answer to their medical problem.

One aspect of the book I found most interesting was the application of Artificial Intelligence (AI) in the medical field. Author Sifferlin talks to Dr. Adam Rodman, who had the podcast “Bedside Rounds” of which I was very fond. I’ve also interacted with Dr. Rodman, who is currently interested in the application of AI in medical education, on Twitter (now called X). While I’ve enjoyed reading his comments on Twitter, I do wish Dr. Rodman would go back to presenting his podcast.

I would recommend this book to anyone interested in the art and science of medical diagnosis. It was fascinating to read how doctors go about formulating a diagnosis, as well as what patients can do if their doctor(s) are stumped. There is definitely a future for medicine and Artificial Intelligence, but how they will work together remains to be seen.

4/5 stars

[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion, which I have given here.]
Profile Image for Andrew Degruccio.
355 reviews
May 11, 2026
Let's be honest, ever since Star Trek in the sixties, we have all wanted the machine that does a quick scan, confirms the diagnosis and with a quick flip of a toggle initiates treatment. Reality check, it still doesn't exist and we're no where closer to it in 2026. The best case scenario is a seasoned team of experienced doctors working cooperatively with no hindrance from administration and/or insurance. This team does currently exist and solves medical mysteries in some of the cases they take on. There is no answer to every question unfortunately in medicine. The body and human existence are still full of wonders. Tackling these most unique cases truly holds significant value in improving the medical knowledge base collectively.

Unfortunately, the author's perspective and agenda is abundantly clear in the text. She quotes books that reflect topics she wishes the reader to attend. On the other hand, she neglects to mention equally prescient books on the topic, such as"Over-treated" and "Over -diagnosed". I feel her conclusion reflects the nuance in medicine and diagnosis that she did not appreciate going into this project.
Profile Image for Cari.
Author 21 books190 followers
Review of advance copy received from Edelweiss+
January 16, 2026
This is a really important book for library collections. Diagnoses are such a difficult thing for patients, caregivers, and physicians, and this book looks at both problems and solutions for this crisis. I thought the chapter on AI as well as the one on the physical exam were most interesting. So many doctors not even performing one before making diagnoses, not asking for the right blood work, etc. And generative AI, seemingly the exact opposite, is helping doctors but also hindering them with its imperfections.
Profile Image for Candy.
984 reviews25 followers
March 21, 2026
Fascinating book about medical diagnoses and its evolution. Referencing many experts in medicine and related fields, you see the complexities involved and where medical schools should teach communication skills for doctors who have trouble facing patients with possible diagnoses when there isn’t a definitive one. Late chapters delve into how AI is being used more today in both schools and medical practices. Very interesting and gives readers much to think about.
3 reviews
March 31, 2026
Instant classic. Sifferlin is up there with Gawande and Kidder for her ability to discern what is meaningful as well as her ability to write about it in a compelling way. This is a book that I will be picking up again and again.
9 reviews
April 17, 2026
This is a magazine article grown to book size based on a false premise: that diagnosis is a thing other than a tool. You can make that argument in an interesting way by talking about how diagnosis allows people to bear witness but that argument isn’t made here.
5 reviews
May 16, 2026
Wonderful Book

For anyone who uses the medical system: read this book. You will find something of use for your medical care. I do hope the author will update this book regularly as some of it is written for this particular time.
Profile Image for Talie.
15 reviews
May 18, 2026
It’s an interesting read dont get me wrong, but i really yearned for any kind of analysis beyond “see!! Another reason why misdiagnosis happens”. It also seemed to circumvent the problem by only vaguely addressing systemic issues like institutional racism and healthcare worker burnout
1,029 reviews12 followers
April 14, 2026
2 1/2 stars. Listen to the audiobook. Narration sounded automated. . This book struggled to keep me focused at times. There were some interesting chapters and and some boring ones as well.
Profile Image for Julia Hill.
485 reviews
May 18, 2026
This was an interesting look at the medical practice of diagnosis -- what complicates it, where people turn to when doctors can't figure out what is wrong, and what characteristics make a good diagnostician. The chapter on AI in diagnosis was especially fascinating -- we see how it can identify patterns that humans aren't aware of (it can tell gender from an EKG!), but also how it perpetuates existing biases when it is asked for certain outcomes (e.g. when comparing clinically similar white and Black folks, AI is more likely to identify white people as the better candidate for a treatment because their health costs are higher over a lifetime compared to Black folks...what bozo fed it a cost benefit analysis?). A quick and relevant read.
Profile Image for hallie.
128 reviews9 followers
May 15, 2026
Amazing! (must admit I’m biased, love the UDN) but it is so apparent the time, research, heart and soul that went into telling these stories.
Profile Image for Kasey.
1 review
April 7, 2026
I really enjoyed The Elusive Body by Alexandra Sifferlin. It’s a thoughtful, accessible look at how complex—and still mysterious—the human body is. Alexandra does a masterful job weaving science, history, and storytelling to explore complex topics. I appreciated how it challenges some of the oversimplified narratives around health while remaining balanced and evidence-based. It left me thinking differently about how our bodies work—and how much we still have to learn! I highly recommend this book to anyone.
Displaying 1 - 20 of 20 reviews