Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History

by Sheila M. Rothman

Tuberculosis―once the cause of as many as one in five deaths in the U.S.―crossed all boundaries of class and gender, but the methods of treatment for men and women differed radically. While men were encouraged to go out to sea or to the open country, women were expected to stay at home, surrounded by family, to anticipate a lingering death. Several women, however, chose rather to head for the drier climates of the West and build new lives on their own. But with the discovery of the tubercle bacillus in 1882 and the establishment of sanatoriums, both men and women were relegated to lives of seclusion, sacrificing autonomy for the prospect of a cure. In Living in the Shadow of Death Sheila Rothman presents the story of tuberculosis from the perspective of those who suffered, and in doing so helps us to understand the human side of the disease―and to cope with its resurgence. The letters, diaries, and journals piece together what it was like to experience tuberculosis, and eloquently reveal the tenacity and resolve with which people faced it.

Genres: History, Nonfiction, American History, Health, Medicine, Science, Sociology

332 pages, Paperback

First published January 1, 1994

Reviews

[Lionel Taylor · Rating 2 out of 5]

This book is well written and does a very good job of conveying the experience of TB patient both before and after it was known what actually caused the disease. I thought that the authors explanation of the difference between Consumption ( what the disease was called before the discovery of the bacteria that caused it) and TB was interesting and was useful in drawing a distinction in how patience were treated during those two time periods. By using the diaries and personal accounts of those who were suffering from the disease the author gives the reader a feel for what it was like to live ( and die) with the disease and how it could dominate every aspect of you life including family planning. After reading this book it is hard to deny that TB actually shaped the geography of this country especially out west where many cities were founded as places where people could seek out a cure for themselves.
With all of that being said however, this book has one glaring hole in it. There is very little told about how the lower classes and especially African Americans were effected by TB during this same time period. While the author does say that the book does not focus on these groups this does not help since the poor immigrant and African American population made up an especially large and disproportionate part of the TB population. In fact, African Americans had the disease in such high proportions that during the time period that the author writes about there was open speculation among the medical community as to whether there was a racial propensity to the disease. It seems that the author in some parts of her book was going to pains not to bring this up in order to maintain the original organization of the book but what results in glaring hole in her narrative to those familiar with the topic and a narrative that is incomplete in explaining the " Social Experience of Illness" for the groups that experienced the illness in the largest proportions. While this is a very informative book for what it does cover, the gap in what is and is not written about leaves it hollow and incomplete.

[Cassandra · Rating 4 out of 5]

Instead of focusing on medical practitioners and public health officials, Rothman chooses to focus on the patient as the center of disease in society. She argues that the patient is of equal importance as the doctor, and she offers her narrative as a supplement to the existing scholarship on the history of disease as seen through doctors, nurses, and policy makers. By looking at the patient, Rothman provides a “narrative of illness” that is intimate and personal (1). Her focus on the microcosm of the “invalid” provides the framework for a deeply character driven history as seen from a variety of perspectives. Rothman recounts the stories of people who know they are likely going to die and their preparations to leave behind family, friends, and communities.

One important theme throughout Rothman’s text is the fluidity of the social construction of disease. After Robert Koch identified Tubercle bacillus in 1882, the disease transformed from consumption to tuberculosis, a disease that ensured social stigma due to its communicable nature. Patients diagnosed with tuberculosis were isolated in sanitoriums where medical professions tried desperately to find a cure. This hope for a cure was juxtaposed with the idea of “banishment” and seclusion in Rothman’s sources. This fluidity of disease construction from a natural predilection to a contagious yet curable illness suggests to Rothman the importance of “space, gender, and time” when studying tuberculosis (3). This book provides an excellent example of how to study the social construction of disease in response to medical advances as well as social catalysts for change.

By demonstrating the variety of social expectations for invalids, she illustrates the importance of gender and time in understanding the social construction of disease. Fear of an early death pushed some invalids to religious fervor, while others struggled with issues of parenting and domesticity. After the discovery that tuberculosis is communicable, the growth of public health programs and sanitoriums banished tuberculosis patients to a life of stigma and seclusion. The support networks among patients and their relationships with healthy friends, family and communities provides insight into the long-reaching effects of disease construction. By blending the importance of gender, religion, immigration, and idealization of the Western frontier as Eden, Rothman offers an significant example of how to portray the day to day reality of disease in America. Some understanding of the history of disease would be necessary to catch all of Rothman’s significance and subtle arguments.

[Catherine · Rating 4 out of 5]

History of treatment for tuberculosis patients in the US beginning mid-19th century. Not surprisingly, your treatment was a lot more palatable if you were a man - especially wealthy men, who were likely to be instructed to go live on a Caribbean island for a few years. If you were a woman, you stayed home and relied on hired help or your relatives to help raise your children and take care of you.

Several chapters told the story of Deborah Vinal Fiske, who contracted the disease as a child, but later married and had four children (two of whom died very young). She continued to struggle with the disease, described through her correspondence with family and friends. These letters were retained by Helen Hunt Jackson, her oldest daughter, and reside in Special Collections at Colorado College.

A section of the book is about health destinations, including Colorado Springs, which is one of the reasons I read this book (my grandfather came to Colorado Springs for tuberculosis treatment when he was 18). The final section covers individual experiences of patients in many different sanitoriums, and the epilogue wraps up with treatments discovered in the 1940s and the status of tuberculosis throughout the world at the time the book was written.

[Laura · Rating 5 out of 5]

This book is informative and at the same time supremely readable. A well organized history, it brings the reader's attention to several themes unrelated to its central topic. This look at tuberculosis allows us insight into ordinary Americans' anti-slavery efforts, the East Coast prejudice against the Irish immigrant, America's gender bias, and most poignant, how health panics can rob citizens of their liberty and even familial rights. The contrast presented between the treatment of tubercular individuals and their 'consumptive' predecessors is absolutely chilling.

[Corbin Routier · Rating 4 out of 5]

The book largely shares experiences of those who lived with tuberculosis. It shows how social understanding can shape the treatment of people with a disease. The author is very good at labeling the limitations of her stories. The author acknowledges that most of the anecdotes come from a fairly specific demographic: white, educated, middle to upper class. This limitation does not hinder the book.

[Meredith · Rating 4 out of 5]

This book was really useful for research into ideas surrounding tuberculosis at different time periods in history. However, it's scope is pretty limited. The author does not explore the history of TB in the African American or Native American communities, so it's best to look at other sources in addition to this one to get a clear picture of the disease during this time period.

[Tamela Rich · Rating 5 out of 5]

TB has a fascinating social and scientific history. I read this as background for a book I'm writing based on my great-aunt's diaries and correspondence from an Asheville, North Carolina TB cottage.

[LK · Rating 5 out of 5]

Patient-focused narrative of tuberculosis in the 1800s-1900s, including New England men & women; going out west.

[Bella Testerman · Rating 1 out of 5]

All she does is yap

[abbby kelso]

damn everything really is about tuberculosis if u look hard enough

[Dan · Rating 4 out of 5]

Compelling book that examines the experience of mainly middle-class, literate white people in the 19th and early 20th centuries with respect to tuberculosis. It's a useful read, definitely; she does not accept the stronger forms of the argument that disease as a social construct. Really, the book is focused on the patient experience with TB and offers a useful perspective.

I only give it 4 stars b/c the epilogue--linking tuberculosis to the more recent example of HIV--is deeply strained. Rothman indicates something like that the earliest sufferers of HIV were more mainstream than in the case of some other illnesses. I think that is a terrible mischaracterization, considering how marginalized some of the disease's earliest victims were b/c of sexual orientation.

Otherwise, this was extremely well written, and I appreciated the organization of the various ideas.

[Mary · Rating 4 out of 5]

An excellent book overall, but I have one issue with it. Rothman's study and others about tuberculosis lack depth on the topic of sanatoriums. I am surprised that her sources are diaries, memoirs, and letters, with no indication that she had any personal interaction with an ex-patient. In the early 1990s, there would still have been thousands of tuberculosis survivors available for her stated purpose of looking at this medical history from the perspective of the patient. She has instead perpetuated the institutional stereotype with a sweeping description of doctors as "aloof and uncaring figures" and the narratives as "angry and bitter" tales.

[Pam Lindholm-levy · Rating 4 out of 5]

I read all of this book a few years ago. Recently I revisited it and discovered--again--that one of the women TB sufferers in the time before sanitoria (ums?) was the mother of Helen Hunt Jackson, who came down with it later in life and wrote "Ramona."

[Lizz · Rating 5 out of 5]

Wonderfully real accounts of how invalids lived in the days before antibiotics.