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Chronic Illness in the United States
Commission on Chronic Illness
Harvard University Press

logo for Harvard University Press
Chronic Illness in the United States
Commission on Chronic Illness
Harvard University Press

front cover of Final Negotiations
Final Negotiations
A Story of Love, and Chronic Illness
Carolyn Ellis
Temple University Press, 1995

When Carolyn Ellis, a graduate student, and Gene Weinstein, her Professor, fell in love, he was experiencing the first stages of emphysema. As he became increasingly disabled and immobile, these two intensely connected partners fought to maintain their love and to live a meaningful life. They learned to negotiate their daily lives in a way that enabled each of them to feel sufficiently autonomous—him not always like a patient and her not always like a caretaker. Writing as a sociologist, Ellis protrays their life together as a way to understand the complexities of romance, of living with a progressive illness, and, in the final negotiation and reversal of positions, of coping with the loss of a loved one.

This rare memoir full of often raw details and emotions becomes an intimate conversation about the intricacies of feeling and relating in a relationship. What Ellis calls experimental ethnography is a finely crafted, forthright, and daring story framed by the author's reflections on writing about and analyzing one's own life. Casting off the safe distance of most social science inquiry, she surrenders the private shroud of a complex relationship to bring sociology closer to literature.

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front cover of Final Negotiations
Final Negotiations
A Story of Love, Loss, and Chronic Illness
Carolyn Ellis
Temple University Press, 2018
In this revised and expanded edition of Final Negotiations—a personal account of caring for her partner, Gene Weinstein, and then coping with losing him to chronic emphysema— Ellis reflects back on her experiences as a caregiver, focusing on identity, vulnerability, emotions, and the aging process of an engaged academic. Now, decades later, she reconsiders who she was then, and how she has continued to be affected both by these events and by writing about them. She contemplates how she might act, think, and feel if she were going through the caregiving process again, now.

Taking an autoethnographic perspective, Ellis focuses on her feeling and thinking self in relationships, narrating particular lived experiences that offer a gateway into understanding interpersonal and cultural life. In her new epilogue, “From New Endings to New Beginnings,” Ellis describes her changed identity and how Final Negotiations informs her life and her understanding of how she and her current partner grow older together. She hopes her book provides companionship and comfort to readers who also will suffer loss in their lives.
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front cover of Good Days, Bad Days
Good Days, Bad Days
The Self and Chronic Illness in Time
Kathy C Charmaz
Rutgers University Press, 1993
Kathy Charmaz has written a compelling book on chronic illness and the effect it has on the self-concepts of those who suffer. It will appeal to anyone facing a long-term problem that seems beyond control. Her work is based on interviews with people suffering from such diseases as cancer, multiple sclerosis, and arthritis, and with their caregivers. Charmaz looks at how these people disclose their illness, how they experience their emotions, and how they manage daily life.

Illness provides a mirror that allows sufferers to see themselves and to become more introspective. As they struggle for control over illness and control over time, they also struggle to control the central images of the self. For example, the chronically ill may situate their self-concepts in the past, present, or future. Charmaz examines under what conditions they situate their self-concepts in each of those timeframes. People may say they live one day at a time. They may bracket certain experiences, such as a heart attack, as timemarkers or turning points in the past. Or they may look ahead to recovering their health. Or ahead to death. 

Charmaz artfully combines near jargon-free analysis with moving stories about how people have experienced illness, usually told in the sufferers' own words. She enters the world of the chronically ill, and brings us into it.

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front cover of In Sickness and in Play
In Sickness and in Play
Children Coping with Chronic Illness
Clark, Cindy Dell
Rutgers University Press, 2003

For children who live with a chronic illness, each day is filled with endless treatments, painful symptoms, confusion, and embarrassment. How can an eight-year old girl understand diabetes let alone explain to her schoolmates why she has to leave class to have her blood tested? How can the father of a child with asthma ever sleep soundly through the night with the fear that his son may suffocate in the next room.

In In Sickness and in Play, Cindy Dell Clark tells the stories of children who suffer from two common illnesses that are often underestimated by those not directly touched by them—asthma and diabetes. She describes how play, humor, and other expressive methods, invented by the kids themselves, allow families to cope with the pain. Clark’s work is one of the few studies to focus on maladies that kids must learn to live with rather than die from. Her interviews with forty-six families give readers an understanding of how children comprehend their illnesses and how parents struggle daily to care for their kids while trying to give them a “normal” childhood. Chronically ill children are at a greater risk of developing mental health or social adjustment problems than their peers, and asthma has been gaining ground in both incidence and fatality in recent years. Clark’s eye-opening work emphasizes the importance of improving the lives of these kids by understanding their perspectives, both imagined and real.

In Sickness and in Play is part of the Rutgers Series in Childhood Studies edited by Myra Bluebond-Langer.

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front cover of Living with Lupus
Living with Lupus
Women and Chronic Illness in Ecuador
By Ann Miles
University of Texas Press, 2013

Once associated only with the wealthy and privileged in Latin America, lifelong illnesses are now emerging among a wider cross section of the population as an unfortunate consequence of growing urbanization and increased life expectancy. One of these diseases is the chronic autoimmune disorder lupus erythematosus. Difficult to diagnose and harder still to effectively manage, lupus challenges the very foundations of women’s lives, their real and imagined futures, and their carefully constructed gendered identities. While the illness is validated by medical science, it is poorly understood by women, their families, and their communities, which creates multiple tensions as women attempt to make sense of an unpredictable, expensive, and culturally suspect medically managed illness.

Living with Lupus vividly chronicles the struggles of Ecuadorian women as they come to terms with the experience of debilitating chronic illness. Drawing on years of ethnographic research, Ann Miles sensitively portrays the experiences and stories of Ecuadorian women who suffer with the intractable and stigmatizing disease. She uses in-depth case histories, rich in ethnographic detail, to explore not only how chronic illness can tear at the seams of women’s precarious lives, but also how meanings are reconfigured when a biomedical illness category moves across a cultural landscape. One of the few books that deals with the meanings and experiences of chronic illness in the developing world, Living with Lupus contributes to our understanding of a significant global health transition.

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front cover of Maturing Masculinities
Maturing Masculinities
Aging, Chronic Illness, and Viagra in Mexico
Emily A. Wentzell
Duke University Press, 2013
Maturing Masculinities is a nuanced exploration of how older men in urban Mexico incorporate aging, chronic illness, changing social relationships, and decreasing erectile function into their conceptions of themselves as men. It is based on interviews that Emily A. Wentzell conducted with more than 250 male patients in the urology clinic of a government-run hospital in Cuernavaca. Drawing on science studies, medical anthropology, and gender theory, Wentzell suggests the idea of "composite masculinities" as a paradigm for understanding how men incorporate physical and social change into gendered selfhoods.

Erectile dysfunction treatments like Viagra are popular in Mexico, where stereotypes of men as sex-obsessed "machos" persist. However, most of the men Wentzell interviewed saw erectile difficulty as a chance to demonstrate difference from this stereotype. Rather than using drugs to continue youthful sex lives, many collaborated with wives and physicians to frame erectile difficulty as a prompt to embody age-appropriate, mature masculinities.

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front cover of Stigma Stories
Stigma Stories
Rhetoric, Lived Experience, and Chronic Illness
Molly Margaret Kessler
The Ohio State University Press, 2022
In Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness, Molly Margaret Kessler focuses on ostomies and gastrointestinal conditions to show how stigma is nearly as central to living with chronic conditions as the conditions themselves. Drawing on a multi-year study that includes participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles, Stigma Stories advocates for a rhetorical praxiographic approach that is attuned to the rhetorical processes, experiences, and practices in which stigma is enacted or countered.

Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how  stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.

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