Bittersweet: Diabetes, Insulin, and the Transformation of Illness
320
Bittersweet: Diabetes, Insulin, and the Transformation of Illness
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Overview
Bittersweet chronicles this history of diabetes through the compelling perspectives of people who lived with this disease. Drawing on a remarkable body of letters exchanged between patients or their parents and Dr. Elliot P. Joslin and the staff of physicians at his famed Boston clinic, Feudtner examines the experience of living with diabetes across the twentieth century, highlighting changes in treatment and their profound effects on patients' lives. Although focused on juvenile-onset, or Type 1, diabetes, the themes explored in Bittersweet have implications for our understanding of adult-onset, or Type 2, diabetes, as well as a host of other diseases that, thanks to drugs or medical advances, are being transformed from acute to chronic conditions. Indeed, the tale of diabetes in the post-insulin era provides an ideal opportunity for exploring the larger questions of how medicine changes our lives.
Product Details
| ISBN-13: | 9780807863183 |
|---|---|
| Publisher: | The University of North Carolina Press |
| Publication date: | 01/21/2004 |
| Series: | Studies in Social Medicine |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 320 |
| Lexile: | 1640L (what's this?) |
| File size: | 5 MB |
About the Author
Read an Excerpt
Bittersweet
Diabetes, Insulin, and the Transformation of IllnessBy Chris Feudtner
The University of North Carolina Press
Copyright © 2003 University of North Carolina PressAll right reserved.
ISBN: 978-0-8078-2791-8
Chapter One
Disease and Medicine Today
The medical art consists in three things-the disease, the patient, and the physician. The physician is the servant of the science, and the patient must do what he can to fight the disease with the assistance of the physician. -Hippocratic Epidemics, Book 1, Section 11
Irony in an Era of Medical Marvels Diabetes History as a Study of Health and Hope
All changed, changed utterly: A terrible beauty is born. -W. B. Yeats, "Easter, 1916"
If today is like most days, approximately two dozen children across America will develop diabetes mellitus, joining a million other Americans who have so-called insulin-dependent, juvenile-onset, or Type 1, diabetes mellitus. These girls and boys will present the symptoms and signs of the disease in a variety of ways: one might start to urinate prodigiously or wet the bed again at night; another may be mired by fatigue that has not lifted for weeks on end or by a cough and cold that will not release its grip; yet another may become gravely ill with diabetic acidosis, complete with heavy breathing and perhaps even coma or shock. No matter how their illness presents, the diagnosis of diabetes will for the most part be confirmed by finding an elevated blood sugar level. Other tests will be done, but the children will be started on therapy immediately, receiving their first dose-of a lifetime of doses-of insulin. Given either as a continuous infusion into a vein or as an injection just under the skin, this insulin will begin to save their lives. Over the next several days, these children and their families should receive careful and dedicated education about diabetes and how to care for this disease. For nearly all families, this will be a period of tremendous worry and stress. For many, during the months following their diagnosis they will settle into a life of living with diabetes. Perhaps they will read about the special summer camps for boys and girls with diabetes, or of famous athletes and actors who have diabetes, or even the possibilities of measuring blood sugar without having to poke through their skin and draw blood, or taking insulin by nasal spray instead of injection. For the most part, balancing trepidation with hope, they will start to look forward.
Why then-given the promise of future improvements in diabetes self-care-would any person with diabetes wish to look back? And why would anyone who doesn't have diabetes want to learn more about this ailment? These are reasonable questions, and this chapter introduces several answers that the remainder of the book elaborates. At the most specific level, examining the history of diabetic experience illustrates how people with diabetes have, over the years, faced particular challenges. Tracing the course of their struggles illuminates modern versions of these challenges. At the most general level, studying the history of a once acutely fatal condition transformed by medical intervention into a chronic illness reveals ironic dilemmas created by our prevailing views of illness and medicine, personal responsibility and the pursuit of control over disease.
Typically, our understanding of both levels-of specific human illness experience and of philosophical questions about the role of medicine in our lives-is dominated by a "technological ethos." Since this ethos has fundamentally shaped how the history of diabetes has usually been recounted, we will begin our historical journey here with a brief but standard account of "diabetes history as the discovery of insulin" and consider how this account demonstrates precisely the problem of limited perspective that plagues us currently.
Diabetes and the Technology Ethos
In the second century a.d. the Greek physician, Aretaeus of Cappadocia, declared, "Diabetes is a mysterious illness ... [where] the flesh and limbs melt into urine." While earlier descriptions of diabeticlike symptoms appear in the Papyrus Ebers (an Egyptian medical text dating from the sixteenth century b.c.), Aretaeus provides the oldest unambiguous depiction of diabetes, reporting how the disease made "life disgusting and painful; thirst unquenchable; ... and one cannot stop them either from drinking or making water." A patient's condition was even more dire "if the constitution of the disease be completely established; for the melting is rapid, the death speedy." The term "diabetes" derived from the Greek word for "siphon," since ingested water appeared to run straight through the body and out of the bladder as urine, as though through a siphon. Although other physicians had used the term before Aretaeus wrote his tract, he applied it in a novel way. In his harrowing account, this triad of symptoms-never-ending thirst, copious urination, wasting of the body-signified a unique disease entity.
In 1674 the Englishman Thomas Willis published "The Diabetes or Pissing Evil." Like many physicians before him, Willis was greatly impressed by the volume of urine that people with diabetes produced, observing that "those laboring with this Disease, piss a great deal more than they drink, or take of any liquid aliment; and moreover they have always joined with it continual thirst, and a gentle, and as it were hectic Fever." Willis, however, disputed the claims made by other physicians that diabetics simply urinated whatever they drank, unchanged or "unconcocted." Willis asserted that all diabetic urine, "differing both from the drink taken in, and also from any humor that is wont to be begot in our Body, was wonderfully sweet as if it were imbued with Honey or Sugar."
One hundred years later, the importance of Willis's observation of "honey" sweet urine was still being debated. Matthew Dobson, a physician practicing at the Liverpool Public Infirmary, summed up the medical dispute in an article published in 1776: "Some authors, especially the English, have remarked, that the urine in diabetes is sweet. Others, on the contrary, deny the existence of this quality, and consequently exclude it from being a characteristic of the disease." Entering the medical debate, Dobson reported studies he had conducted on a thirty-three-year-old former soldier. Peter Dickonson had been a healthy man until his diabetes began. "He first observed that he was very thirsty, that he drank large quantities of water, and made large quantities of urine." When Dickonson entered Liverpool's public hospital in October of 1772, "he was emaciated, weak, and dejected; his thirst was unquenchable; and his skin dry, hard, and harsh to the touch, like rough parchment." Dobson used a "gentle heat" to evaporate two quarts of Dickonson's urine. "There remained, after the evaporation, a white cake which ... was granulated, and broke easily between the fingers; it smelled sweet like brown sugar, neither could it, by the taste, be distinguished from sugar." The sweet taste of the urine suggested to Dobson that "this saccharine matter was not formed in the [kidney], but previously existed in the serum of the blood." Dobson emphasized further that this observation "well explains [diabetes'] emaciating effects, from so large a proportion of the alimentary matter being drawn off by the kidneys, before it is perfectly assimilated, and applied to the purposes of nutrition."
After Dobson's report there followed a succession of dietary therapies for diabetes-including John Rollo's prescription of an "animal diet" in 1797 that included "plain blood-puddings" and "fat and rancid old meats"-each attempting to feed people with diabetes foods that their bodies could assimilate. Rollo's avoidance of sweet or vegetable foods evolved, by the early 1900s, into much more complicated dietary schemes of undernutrition. All the diets, however, were ultimately of minimal benefit in staving off death. Patients under ten years of age could hope to live no more than three years after they were diagnosed, while those aged sixty years or more lived about six years. Diabetic patients who could afford the best medical care for their condition spent these terminal years living in a semistarved state that ended in either coma, infection, or starvation. By all accounts, diabetes was a deadly disease.
The prognosis for people with diabetes was forever rewritten in the summer of 1921 and the year that followed with the discovery and initial development of insulin by Frederick G. Banting, Charles H. Best, James B. Collip, John J. R. Macleod, and other researchers in Toronto. By the autumn of 1922, insulin was being made commercially. Among the initial medical reports on insulin, perhaps most compelling was Ralph H. Major's introduction to the readers of the Journal of the American Medical Association regarding the drug's miraculous effects, communicated with two contrasting photographs: "The boy shown in Figure 1 is an example of severe juvenile diabetes. At the time the picture was taken, Dec. 7, 1922, he had had diabetes for two years, and it had been impossible to render [his urine sugar-free] except on a diet of 5 per cent. vegetables [such as lettuce, cucumbers, water cress, broccoli, and the like], with days of complete starvation. His weight at this time was 15 pounds." Not quite three months after the first picture was taken, the unnamed child was photographed again on 26 February 1923. He had doubled his weight to thirty pounds and was consuming a diet of nearly 1,500 calories a day.
These two portraits were stunning. The boy's gain in weight alone was sufficient to impress even the most skeptical readers. Beyond this obvious improvement, other aspects of the photographs further intensified their impact. Before insulin, emaciated and naked, the youngster clung to his mother, supported by her stout arms, his entire body on display; his closed eyes and fixed grimace, set alongside his mother's stoic gaze, heighten the sense of his suffering. After insulin, he was photographed sitting by himself, no longer dependent, peering at the camera, clothed in a sailor suit. Not only had his facial features filled out, the enlarged scale of the photograph made him look nearly twice as large. The message was clear and incontrovertible: insulin worked wonders.
Major was not alone in employing this powerful visual rhetoric. Several other physicians, whose pioneering accounts of treating diabetics with insulin appeared in the Journal of Metabolic Research during the late spring of 1923, also resorted to dramatic before-and-after pictures. Indeed, these images continue to appear to this day in texts on the history of diabetes and to be flashed upon the auditorium screen in medical lectures on diabetes.
The discovery of the elusive pancreatic extract fired the imagination of laypeople and doctors alike. Early on, after the Toronto group of researchers and their American colleagues had miraculously "cured" several emaciated, near-to-death patients with the pancreatic extract, the lay news media raved, awed at the power of a new scientific medicine. A May 1923 New York Times article, titled "Diabetes, Dread Disease, Yields to New Gland Cure," recounted how, "one by one, the implacable enemies of man, the diseases which seek his destruction, are overcome by science." Diabetes was "the latest to succumb. Its conquest is a feather in the cap of science." A month later, insulin landed on the front page of the New York Times, which heralded the recoveries from severe diabetes of former secretary of state Robert Lansing and of Elizabeth Hughes, daughter of the then current secretary of state, Charles Evans Hughes. Lansing had not only "gained greatly in flesh and in strength, but his dietary restrictions have been completely removed, so that he is permitted to eat as much as he desires of all varieties of food." Elizabeth Hughes was "practically cured."
The reaction of the medical community was no less enthusiastic. In 1923, Banting and Macleod shared the Nobel Prize for the discovery and initial development of insulin. By the mid-1920s the majority of articles appearing in general medical journals indicated that diabetes could be conquered by daily insulin injections. For example, in 1930 the diabetes expert Frederick M. Allen asserted in the New England Journal of Medicine, "Diabetes has been scientifically mastered. Theoretically, every patient can be expected to live out his full natural lifetime." Allen echoed the sentiments of many physicians, who seemed to feel that even if insulin had not eradicated the disease, it had at least turned it into a problem that could be managed successfully.
To take a later example of such enthusiasm, a group of scientists in their book The Story of Insulin: Forty Years of Success Against Diabetes asserted, "Few stories of discovery carry more drama than that about Insulin. The leap from despair and death was so sudden." Writing in the early 1960s-at a time when countless diabetics were encountering the complications of blindness, kidney failure, and amputations-they went on to add, "Forty years after that discovery, the miracle of Insulin has an ever-growing significance; more and more people of all ages have had the moving experience of being drawn back from sickness and death into health and happiness."
These photographs and verbal portraits of miraculous therapeutic success present a modern yet mythic account of diabetes history, accentuating the potency of insulin as a heroic wonder drug to rescue patients, vanquish disease, banish suffering, and finally secure an implied but unexamined "happily-ever-after" ending. Mythical storytelling elements such as these permeate much of our current appreciation of other medical technologies. When pharmaceutical companies launch promotional advertising campaigns showing pictures of bald yet smiling cancer survivors; or when proponents of the human genome project speculate how gene therapy will eliminate certain inborn diseases; or when former trauma patients testify how they were saved by the latest radiographic machines that swiftly provide remarkably precise body images; or even when the biotechnology industry shows film clips on television of children spared from blindness due to rice supplemented with vitamin A, these examples of scientific achievement are all presented in the mythical aura of an idealistic quest for a better world. As they tap into our fears and desires, these stories about medicine reflect a broad technology ethos in our culture, the American propensity to embrace more technology as the best solution to our problems.
Perhaps no story of medical progress, though, has been more influenced by this technology ethos than the history of diabetes. Stories of insulin have served various needs while reinforcing deeply held beliefs of twentieth-century Americans. A parable of salvation, the tale of diabetic deliverance has spoken to the imagination of doctors and laypeople alike, serving as a potent and often cited symbol of scientific progress and the prospect of human mastery over disease. One of the most impressive stories about modern medical miracles, the tale of insulin saving diabetics has legitimated the prestige and power that Americans have invested in scientific medicine and its technical wizardry.
The mythically framed accounts of diabetes history, however, conceal more than they reveal. Focusing on a wonder drug, they distract from the human realities of living with diabetes-all the people involved in the mundane yet challenging realities of daily diabetic work and their personal struggles with illness that continued well after the discovery of insulin. Emphasizing a miraculous event, these accounts ignore the more sober legacy of this "miracle"-all the problems that remained, all the new problems created by the transmutation of diabetes into a chronic disease. Exulting in an unexamined belief in progress, they fail to grapple with the difficult task of weighing the mixed consequences of medical intervention-all the years of life added poised against all the ramifications of living with a chronic, often debilitating disease.
Simply put, we need to reappraise the happily-ever-after ending: diabetes still devastates lives. Approximately 1 million Americans currently have juvenile-onset, Type 1, diabetes mellitus, with perhaps another 10 million afflicted with the adult-onset, Type 2, form of the disease. Although much of the public believes that diabetes has been cured or at least tamed, the health statistics present a very different picture: Diabetes today is the primary cause of new-onset blindness in adults, accounts for a third of all cases of kidney failure, leads to half of all nontraumatic limb amputations, and overall stands as the seventh leading cause of death. Diabetics live with a substantial risk of heart attack, heart failure, and stroke. Infants born to diabetic mothers are more likely to have congenital abnormalities and to die either in utero or shortly after birth. Even for those patients who do not develop complications, their lives are irrevocably altered by the diagnosis of diabetes, for they must monitor their diets and often either take oral medicine or inject or infuse insulin-and hope that they remain well. The "cure" of insulin has become the accomplice to a newly created disease of complications.
(Continues...)
Excerpted from Bittersweet by Chris Feudtner Copyright © 2003 by University of North Carolina Press. Excerpted by permission.
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What People are Saying About This
A consummate study in irony, in the classical sense of the dramatic unfolding of tragic consequences from apparently benign events.—British Journal for the History of Science
For anyone who has lived with diabetes or who has tried to manage it, this book provides resonating and arresting insights.—Medical History
Dr. Feudtner's book focuses on the history of diabetes through the observations of people who have lived with it.—The New York Times
Provides insight into diabetes from the pre-insulin era through the 1950s. . . . Highly recommended.—Choice
Open[s] up new perspectives—not just about treatment of diabetes, but about the care of everyone who is ill. . . . I would set a book like Bittersweet at the core of my course on doctoring.—Journal of the American Medical Association
[A] superb, gem-like book. . . . What is especially appealing about this informative and provocative tour de force is that, like a cut jewel, its many sparkling facets illuminate throughout—variously, a biographic sketch of Dr. Joslin and some of his colleagues, a compact history of diabetes, an overview of the significance of disease transformation, and an insightful discussion of medical practice and health policy. . . . Every physician would benefit from reading it.—Journal of the National Medical Association
Feudtner offers a significant contribution to the history of medicine. . . . His work has introduced a historical lens through which to better understand diabetes and chronic illness.—Journal of the History of Medicine
The considerable power of his book lies in Feudtner's grasp of the expectations and experiences of specific physicians and patients during a half-century that witnessed a fatal disease transformed into a chronic illness.—Journal of Interdisciplinary History
Feudtner provides an illuminating account of the unstable relationship between illness, identity and medical technology. The effect of insulin on the physiology of diabetes . . . is skillfully traced out.—Journal of Contemporary History
This book is an inspiring history of the tremendous effort of so many to bring us this far. The bravery not only of the physicians, but also of the children affected by diabetes, attests to the strength and will of the human spirit, the will to survive, and the ability to overcome adversity and disease.—Francine Kaufman, University of Southern California
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