The Illness Narratives: Suffering, Healing, And The Human Condition

by Arthur Kleinman

From one of America's most celebrated psychiatrists, the book that has taught generations of healers why healing the sick is about more than just diagnosing their illness.





Modern medicine treats sick patients like broken machines -- figure out what is physically wrong, fix it, and send the patient on their way. But humans are not machines. When we are ill, we experience our we become scared, distressed, tired, weary. Our illnesses are not just biological conditions, but human ones.

It was Arthur Kleinman, a Harvard psychiatrist and anthropologist, who saw this truth when most of his fellow doctors did not. Based on decades of clinical experience studying and treating chronic illness, The Illness Narratives makes a case for interpreting the illness experience of patients as a core feature of doctoring.

Before Being Mortal , there was The Illness Narratives . It remains today a prescient and passionate case for bridging the gap between patient and practitioner.

Genres: Anthropology, Medicine, Nonfiction, Health, Medical, Psychology, Science

304 pages, Paperback

First published May 20, 1988

Reviews

[Rachel · Rating 4 out of 5]

Dr. Kleinman makes a distinction between illness and disease, and explains that the job of the physician is to reconfigure patients’ culturally-shaped “illness problems” (experiences of symptoms and suffering) as narrow, technical “disease problems” (anatomical or physiological changes). He claims that “the way of the the specialist diagnostician, which is not to credit the patient’s subjective account until it can be quantified and therefore rendered more ‘objective,’ can make a shambles of the care of the chronically ill.” And so he says that in order to provide good care, doctors must learn to listen to and understand patients’ interpretations of their own illnesses. A big part of caring for the chronically ill should be “empathetic witnessing,” which helps people make sense of and give value to the illness experience. That is mostly what this book is about.

I love the part near the beginning where Kleinman goes, “Both cancer and heart disease intensify our awareness of the dangers of our times and of the man-made sources of much misery. But the government response is meant to obfuscate this vision of sickness as meaning something is wrong with the social order and to replace (medicalize) it with narrowly technical questions.” I got all excited at this point because I thought he was starting to say something really cool about the arbitrariness of the illness/disease distinction—but then he didn’t really do it. In Kleinman's analysis, the brute material physiological processes that constitute disease become meaningful experiences of illness through a kind of cultural mediation. I myself am dubious of this distinction between illness and disease because I am obsessed with Georges Canguilhem and his idea that social values are expressed in physiological norms.

So okay, from my perspective, there’s nothing really radical here. And the main point seems fairly obvious to me because this is something I have thought about a great deal. But I don't think it's obvious to everyone. And Kleinman is a total mensch—he writes with such extraordinary clarity, sensitivity and intelligence—I highly recommend this book to anyone who cares for the chronically ill. I also recommend it to anyone who suffers from any kind of chronic illness—i.e., everyone.

[Tzu-yuan Yen]

This book has been translated in Chinese by a women whose husband was died of cancer. She is deeply moved by this book and tried to translate it. The result was not very good, but medical educators in Taiwan still recommend this book for medical students. Failures of modern medical system listed in this book are also big problems in Taiwan, because we implant most of the medical system from United States. What is worse is that our primary care doctors usually doesn't care for the whole family, or keep detailed records for the family he cared. Doctor-patient relationships are often limited to 3-5 encounters, as Klienman rightly observed in his "Patient and Healers in the context of culture". Thus the humanity part of medicine, the part deemed important in physicians caring for chronic illness is not an issue for most medical student here.

[Brianna · Rating 4 out of 5]

I am not a doctor, I have no interest in the medical field, but this book kept my interest. I was required to read parts this for a class, but I finished it independently because I wanted to read more. I think this book can be revealing to everyone, whether they are doctors, med school students or prospective students, or just the average everymen that want to know more about the field. Some of the stories are hard to read but all are worthy of attention. I feel that after reading this i have more sympathy towards both physicians and their patients, especially those suffering from chronic illnesses. The lessons Kleinman teachers can be applied to everyone everywhere. It is not limited to the medical field. Really, I think we could all do with getting to know people better and understanding their motives. It does not have to be a case of illness and health or life or death to learn more about other people and their beliefs. That's why I think a wide audience can find something in this book to apply to their lives.

[Gijs Limonard · Rating 4 out of 5]

Excellent, albeit somewhat dated, collection of patient stories and musings on clinical medicine; the main point being the irreducibility of the doctor (healer) - patient relationship; a vital message forever worth sharing.

[Sara · Rating 3 out of 5]

It is doubtlessly a comfort to patients everywhere that Kleinman's book, addressed first and foremost to doctors and future doctors, does such an elegant job explaining how the medicalized procedure of getting a patient to describe their illness does violence to their overall experience of the illness. "*I* have the meaning of your illness, and you do not," it says. "The meanings you attach to it are irrelevant. And in fact, some of the symptoms you keep describing are irrelevant. I decide what matters in this narrative."

At its best, Kleinman's book offers case studies that recontextualize illness within its broader settings -- the attitudes entire families have toward weakness and pain, the ways that illness crosses currents with careers, children, marriages. It offers one or two hopeful glimmers of how understanding illness in its very wide context can relieve suffering. Certainly it offers chronically ill patients some sense of autonomy -- if you can't control the problems your body is causing, at least you yourself are in charge of determining what those problems mean.

At weaker moments Kleinman's book can seem entirely too utopian. Faced with a chronic-pain patient who is extraordinarily hostile to those trying to treat her, Kleinman fantasizes an entire ethnographic project in which family, caregivers and patient can collaborate on putting together how her pain communicates and what it might be saying. It's an idea that sounds truly fascinating, but leaves me wondering how it could ever be conducted, given the patient's hostility. And also, given the amount of time and energy that chronic illness drains away from those experiencing it, who would do it? Who would have the resources?

At its worst, Kleinman's book seems to forget that symptoms don't simply receive meaning from the pre-existing world -- they create meaning that wasn't there before and stamp it upon the sufferer's experience. Exhaustion, pain, immobility -- they aren't simply empty vehicles upon which we read the meaning of the wider world. Pain, immobility, and exhaustion distort meanings we would otherwise receive from the world. So, yes, it is important to ask that 65 year-old man how his father's fatal heart attack, his wife's expectations, and his career stage all inform his understanding of his pulmonary blockage, but it's also important to remember that simply having pulmonary blockage summons up pessimism, fear, and vulnerability that did not exist before. One's marriage and one's memories of one's father look differently if you are exhausted and no longer know if you will reliably live through the next five years.

[Vanessa · Rating 3 out of 5]

So far, I am enjoying this book, although I am finding it really hard to get through. It is depressing to read the case studies, but I think Kleinman does a great job at really getting at the way chronic illness and pain affect all aspects of a person, and at the ways in which chronic illness is addressed by the world of medical professionals. You can really see the difference between a patient's lived experience of illness and the medical professional's pathological diagnosis of the same. I liked it so much that I gave it to my mom, who has chronic pain and chronic illness, to read for herself.

[Justinian Guan · Rating 5 out of 5]

simply brilliant. not a read for everyone - the book is written in a thoroughly academic tongue and is structured in a way that serves the points and frameworks the author wants to establish, instead of the reader's ease or comfort. so the read is often dense and more than a little challenging.

with all that said, The Illness Narratives gives the lie to the idea that academic writing must be devoid of character or humanity. it is a very, very human book advocating for equally human ideas. at its heart is the idea that disease and illness are not synonymous: the former is biological, the latter phenomenological (so social, cultural, personal, psychological). and if the former is what the doctor diagnoses, the latter is what the patient lives. if treatment is to be successful, then, all that meaning in its full richness must be heard, understood, and applied.

to illustrate the varieties of experience and meaning that illness comprehends, Kleinman spotlights highly detailed accounts of patients with chronic illnesses (diabetes, high blood pressure) and psychosomatic illnesses (hypochondriasis, Munchausen's), and patients confronting death, pain, and stigma in different ways. generalizations can be made from these cases, of course, but part of the point is that it is in the particular - the way pain is seen differently, in a unique life trajectory, from person to person, for example - that the sufferer is really understood. there, communication and healing can begin.

against the dry biomedical tide that medicine is usually associated with, this book is an excellent bulwark. it makes sense for anyone who has seen another chronically ill, and Kleinman and the patients behind his stories offer real lessons in humanity.

[Honour · Rating 5 out of 5]

This was a beautiful read and only made me cry a few times due to its depth and profound realness. The Illness Narratives is a volume any medical professional, healer, or ill person ought to read. But likely, in your lifetime, you will know someone or be that someone who is ill, and you will be seeking exactly the kind of care Kleinman advocates for–so you should read it too.
Kleinman uses a compilation of narratives that tell the reader what life is like for real people suffering very real ailments. He does this to outline the complexities of illness and the fallacies in our healthcare and clinical care systems, calling for better support and care towards the chronically ill and their families. He takes into account the need for deep, compassionate, and thoughtful approaches to physician-patient relationships, and systems that not only allow but teach physicians to do that. He demands that we thoroughly integrate socio-cultural determinants of health into our narratives around illness, and urges people and practitioners to notice the nuances and life-altering nature of disease.
I loved this book, and it is a startling reminder of the beauty and suffering that every individual walks around with every day.
Honestly, after reading this book I considered applying to Harvard just to see if I could get into a class with Kleinman to study Medical Anthropology. Still might go for it.

[Josh Cruz]

important book for its time but silly to read today

[Msimone · Rating 5 out of 5]

I discovered from my last doctor's visit that Medicare now refers to your annual physical as an annual wellness check-up. Is their terminology change sémantic, or is there an underlying reason for the change? Could it be that an annual "physical" required unecessary costly lab tests, or patient/ doctor time? Would these costs diminish, if the doctor only performed tests or examinations that the patients requested because of experienced symptoms? Perhaps, one would hope that the change of terminology to "wellness visit" would require a more collaborative doctor/ patient relationship " whereas the doctor closely listens to how the patient's perceives the symptons of their illness, so that the doctor can prescribe a treatment for illness and disease accordingly. Kleinman provides anectdotes about positive medical outcomes where doctor/ patient communication includes biomédical diagnoses; but patient illness symptoms manifested through physical, psychosomatic, social, familial and cultural factors . This shared knowledge would help the doctor prescribe the best treatment for the patient, and the patient to live with the illness and the outcomes of the treatment. This book is prescriptive reading for patients to understand the importance of a good doctor/patient relationship to treat their illness. This is a track that doctors might follow if there were not so much pressure on them to prescribe and test in order to receive their income.

[Ashley · Rating 3 out of 5]

I recognize the importance of this book. Yet, I also worried that Kleinman swung too far to the psychosocial end of the spectrum. His focus on chronic pain, though interesting, limits the applicability of his insights to diseases with a biological agent (eg AIDS or drug resistant tuberculosis). That said, his distinction between illness, disease, and sickness is useful for medical historians and anthropologists. Likewise, his method for displaying patient narratives and his interpretation is a helpful model.

Also, the book feels a little dated. His insights have clearly had an impact. Many advocates, physicians, and scholars understand that illness has influenced delivery of care. It's also influenced debate about health care reform. An updated version would go along way toward making this book feel more useful and applicable outside chronic pain issues.

[Melsene G · Rating 3 out of 5]

The first 50 or so pages were difficult to get through but once I got past that, I settled in and was able to appreciate the narrative stories of individual patients and how they dealt with chronic illness. Much of the book is for the clinician and may be difficult for the layman. My takeaway is that docs need to focus more on the illness and the psychosocial aspects as opposed to the biomedical aspects of disease. I originally picked up this book because it was referenced in a book on the Hmong from Laos and the cultural differences in treating patients. As a current theme throughout medical books, the open assault on capitalism is problematic. The argument for socialism and communism is certainly a weak one, but the medical literature seems to argue for it nonetheless. Sadly, that is not the answer to rising costs and access to healthcare.

[Anna · Rating 4 out of 5]

This is a pretty influential book, and with good reason--Kleinman illuminates the importance of looking at the "whole patient" when dealing with chronic illness and pain, instead of relying purely on psychoanalytic explanations or the biomedical model. As a person with a chronic illness myself, I appreciated Kleinman's nuanced take on the social *and* medical components of dealing with and treating chronic illness. it would have been nice if he'd included more of an analysis of ableist attitudes often leveled toward people with chronic illness and pain, but for having been written in the late 1980s it's still a compelling read.

[C · Rating 5 out of 5]

Beautiful and compelling. My kind of book: a treatise of sorts on the experience of illness whose chapters begin with epigraphs from Roethke, Kafka, Rilke, etc. Arthur Kleinmen, a doctor and medical anthropologist, manages to be both sensitive and practical in his analysis of the medical system's failure to respond adequately to the needs of chronic patients. If I had my way, this book would be required reading for all doctors, present and future.

[Jennifer J. · Rating 4 out of 5]

Like watching Citizen Kane for the first time. He had so many ideas that have become the basis of so much social science and medical "common sense". A fast, highly worth-while read.

[Karen · Rating 3 out of 5]

Lots of meaning for those who work with the chronically ill. He has some good insights into the state of medicine and this population.

[Denise Lan · Rating 5 out of 5]

Fascinating read!

Dr. Arthur Kleinman has changed the way I see, define and experience “illness” and “disease”. As a healthcare professional, this book has helped me to develop my own understanding of patient’s personal experience of the disease. Also, how illness narratives affect the trajectory of disease processes and influence patient outcomes.

Most importantly, this book has taught me to stay uncomfortably human in the face of my patients’ intractable pain and bitter circumstances. My job would NOT get easier by hardening myself into a cold and objective healthcare worker. However, being soft and human could potentially cure how patient experience their illness.

In this book, healing takes place when great compassion and shared understanding are present. Indeed, it does not suffice to have powerful medical techniques to treat diseases, but with wisdom to inexorably alleviate human suffering.

[Caroline Burleigh · Rating 5 out of 5]

Dr. Kleinman merges a lifetime of anthropological study with his more recent experience as a medical provider to create a nuanced glimpse into the illness experience. Between remembered doctor-patient interactions, mini-ethnographies, and inter-cultural commentary, "The Illness Narratives" faces head-on the complexities of understanding the role of chronic illness in a healthcare system built to treat the acutely ill.
As a patient who has navigated some of these same complexities, I found this account relatable and sensitive to my own experience. More importantly, it contributed positively to my development of empathy as a provider-in-training.
I would recommend "The Illness Narratives" to anyone, from any angle, who is seeking a better understanding of how chronic illness impacts their world and how simple empathy can aid in healing what hurts.

[Courtney · Rating 4 out of 5]

3.5 stars: This book does a really good job at separating biomedical "disease" and clinical treatment from illness experience. Despite its publication in 1988, it still feels highly relevant. The chapters are short and digestible for such an academic text, and the inclusion of full patient quotes and stories emphasized the larger theories and frameworks Kleinman advocated. However, a lot of Kleinman's discussions of psychosocial illness causes come across as victim-blaming and imply that coping with an unjust world to minimize individual illness outweighs challenging the structures and status quo of a world that continues to make so many people ill on a collective level. I would've appreciated him taking a more sociological and less narrowly psychological view on patients' stories, too.

[Veronica Liew · Rating 5 out of 5]

Having read Dr Kleinman's other book (What Really Matters), I borrowed this to read up on his research and ideas of the chronically ill. I wished I was reading this as a doctor as I would gain so much more from it. Even then, reading this as a layperson gives me a look into a medical professional's head when they encounter and have to care for the chronically ill. Wonderfully written (though at times in deep medical lingo) and a compassionate examination of why and how doctors and medical caregivers need to do better to provide a holistic and respectful care for the ill.

[Brody Carmack · Rating 4 out of 5]

This book was a beautiful description of chronic illness and a great perspective of the health care systems in which we operate. The only reason I am not giving it five stars is because I want to re-read it once I am in medical school. I don’t think I am currently the main target audiences for the book, but regardless it was a book from which I learned some valuable lessons.

[Susannah Carter · Rating 4 out of 5]

Another thesis read, but a great book. I read some of Kleinman's work for a medical anthropology class, and I'm grateful to have circled back to this. A lot of insightful commentary about the different roles patients and providers take in the process of medical storytelling.

[Nicole · Rating 3 out of 5]

Good piece on caregiving in the medical field

[Alyce Yang]

crucial scholarship for its distinction between illness, disease, and sickness

[Matthew Eck · Rating 5 out of 5]

Narrative medicine 101

[Thomas Amburn · Rating 3 out of 5]

Tedious but insightful

[Jay · Rating 5 out of 5]

Rereading this as a medical student has refreshened my vocational calling. What Virchow calls the "Natural Attorney of the poor" and Farmer the "Physician Anthropologist," Kleinman recenters such ideals onto the patient and their narratives.

It's one thing to investigate patient disease. It's a whole other endeavor to make worthwhile observations and deeper conversations on patient illness: lived experiences of that disease and social determinants, structural violence, and adversity that paint the larger picture in which the disease lives.

This book receives my highest personal praise for not just the narrative Kleinman brings from his own life, but then to bring the concept of the "Illness Narrative" to the too-often mechanical world of Western healthcare.

[Dahianira · Rating 5 out of 5]

Kleinman eloquently presents various cases and perspectives of chronic illnesses and manages to clearly make a distinction between what is to treat a disease versus what it entails to care for the chronically ill as a whole. Very insightful with punctual recommendations I think medical and health care institutions should consider now more than ever.

[JOE C · Rating 4 out of 5]

疾痛是患者的感受，疾病是医生的诊断，两者通过生物医学的系统抽象出医学意义上的治疗方案，过程中很难考虑到患者心理与社会层面的因素。这种诊疗对于急性疾病往往药到病除，而对于慢性疾病来说，疾痛的感受要通过语言与理化检查的信号转译，而患者又难免陷入到疼痛的迷雾之中：任何自我的描述似乎都是不真切的，疼痛转瞬即逝又倏忽而至，连感受疼痛的能力也同样值得怀疑了。书中另一方面提倡医疗中人文因素的重要性，剖析和共情患者的过往创伤，加入心理分析的维度，试图将慢性疼痛变得更加可以处理，可以应对。很温柔，但过于理想了。