Reframing health and illness: a collaborative autoethnography on the experience of health and illness transformations in the life course

In this collaborative autoethnography, we examine the processes whereby people may reframe their interpretations and understandings of health and illness as a result of new diagnostic information. In so doing, we utilise the first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine. Furthermore, we discuss the ways this case reveals the importance of examining and comparing the social construction and transformation of health and illness within and between different individual and collective lived experiences over time. In closing, we draw out theoretical and empirical implications for understanding transformations in the nature of health and illness over the life course as well as future directions for research investigating shifts in illness management and understanding over time (A virtual abstract of this paper is available to view at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA ).     

Ill Health or Illness: A Reply to Hofmann

In this article I respond to Björn Hofmann’s criticism of some elements in my theory of health. Hofmann’s main objective is to question “Nordenfelt’s basic premise that you can be ill without having negative first-person experiences, and to investigate the consequences of abandoning the premise.” One of Hofmann’s critical points is that my theory of health does not lend voice to the individual. My response is essentially conducted in four steps: (1) I question the aim of conceptual analysis that Hofmann proposes for the analysis of the notion of health. (2) I maintain that my analysis, in spite of Hofmann’s contention, lends voice to the individual. It does so via my notion of subjective illness but also via my notion of vital goal. (3) I argue that conditions, such as coma, paralysis and mania are salient instances of ill health and that these may become neglected if the use of the terms “ill” and “illness” is restricted to instances where negative subjective experiences are present. (4) I rehearse my main arguments for selecting disability as the core element of ill health and respond to Hofmann’s contention that persons who are in great pain can sometimes nevertheless perform perfectly.     

On Becoming an Involuntary Member in the Antepartum Unit

In this essay, I articulate the ways in which my scholarship and personal life collided when I became an involuntary member in the antepartum unit of a major university hospital. I draw on research examples taken from my dissertation work in prison and my time in the hospital to illustrate the interconnectedness of these involuntary experiences. After I share these stories, I offer a brief interlude to reflect on the meaningfulness of approaching membership from a continuum-based perspective and the relative implications for health communication scholars, before ending with an articulation how this experience brought me to a more crystallized view of involuntary membership.     

"We wanted a birth experience, not a medical experience": exploring Canadian women's use of midwifery

In this study I explore Canadian women's use of midwifery to examine whether their choice represents a resistance to the medicalization of pregnancy/childbirth. Through my analysis of the data I identified eight ways the women's deliberate decision to pursue midwifery care represented resistance to medicalization. In so doing, I demonstrate how women actively assert their agency over reproduction thus shaping their own reproductive health experiences. The outcome of their resistance and resultant use of midwifery was empowerment. Theoretically the research contributes to understanding the intentionality of resistance and a continuum of resistant behavior.     

Anticipating Loss: Learning to Live with My Father’s Cancer

In this article, I explore my experience living with my father’s cancer diagnosis and treatment, as well as how it has affected our family. I discuss how this 12-year journey of living with cancer as a chronic illness has impacted my experience and how living with the anticipation of loss has shaped me. I reflect on the dialectical tension faced by families dealing with chronic cancer and the implications for how health communication scholars explore the impact of cancer on family members.     

Experiences of Coexisting With Chronic Illnesses Among Elderly Women in Communities

Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. “Using my own power out of the disease shackle” was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.     

“We Wanted a Birth Experience,not a Medical Experience”: Exploring Canadian Women's Use of Midwifery

In this study I explore Canadian women's use of midwifery to examine whether their choice represents a resistance to the medicalization of pregnancy/childbirth. Through my analysis of the data I identified eight ways the women's deliberate decision to pursue midwifery care represented resistance to medicalization. In so doing, I demonstrate how women actively assert their agency over reproduction thus shaping their own reproductive health experiences. The outcome of their resistance and resultant use of midwifery was empowerment. Theoretically the research contributes to understanding the intentionality of resistance and a continuum of resistant behavior.     

Painful childhood: children living with juvenile arthritis

In this article the author explores the everyday life and coping of children living with juvenile arthritis. The author considered the children as experts on their illness who can give valuable insights into illness management from a patient's perspective. This is in contrast to most research, which lets others, such as caregivers, speak in the place of children. She used an ethnographic approach with open-ended interviews and participant observation to capture the complexity of chronic illness's impact on everyday life. Results of the study indicate that living with juvenile arthritis entails a constant taking control over one's body and achieving normality in life. These children must negotiate between their protected status of being a sick child and their immense responsibility in illness management. The author suggests that existing research on adult chronic illness has only limited relevance to understanding children's illness experience and that further research with children is needed.     

Living with a mentally ill parent: exploring adolescents' experiences and perspectives

Although a considerable body of research has described the implications of parental mental illness, the perspectives of children and adolescents have rarely been addressed. In this article, I explore adolescents' experiences in everyday life, based on an action-oriented study of a Norwegian online self-help group for adolescents (aged 15 to 18) with mentally ill parents. The analysis was conducted through participant observation of the group for 2 years. The adolescents experienced a variety of difficult challenges related to their parent's mental illness: lack of information and openness; unpredictability and instability; fear; loneliness; and loss and sorrow. However, they also discussed strategies for active management of the challenges arising from the family situation. I argue that these adolescents can be understood as vulnerable as well as active participants in managing their everyday lives. I emphasize the importance of including perspectives of children and adolescents in further research so as to improve health care for families with parental mental illness.     

Bridging a gap: the (lack of a) sociology of oral health and healthcare

This article provides an historical review of international research related to sociology and oral health and healthcare. I begin by considering the relevance of the mouth and oral health to social interactions and physical health, and outline existing inequalities in oral health and healthcare experiences. The paper examines critically some of the existing published research in the field – considering both what might be described as sociology of oral health and healthcare and sociology in oral healthcare – and demonstrates the dearth of sociological research related to this subject compared to other areas of interest within the field of sociology of health and illness. I conclude by suggesting some ways in which this area could be expanded and developed further. I suggest that sociological analyses of how individuals experience, understand and manage their mouth and oral health, can add to and enhance the broader field of the sociology of health and illness. Further, examining experiences and provision of oral healthcare may provide sociology with a new opportunity to explore the neglected field of private healthcare, but also to engage with health policy makers who seek to address oral healthcare needs.     

Parting thoughts

It has been said that there is no stronger urge than the urge to edit someone else's writing. Upon my retirement from the National Institute of Environmental Health Sciences (NIEHS), and concurrently from my position as co-editor-in-chief of Environmental Health Perspectives, I find that perhaps the stronger urge is not to edit but rather to editorialize. Therefore, I would like to provide some parting thoughts, and with them hopefully some insights gained from my experiences, which have spanned the broad spectrum of environmental health, from basic science to public health policy to science communication. I am grateful to have had the opportunity to work on many different aspects of the environmental health continuum during my time at the NIEHS. In looking back on a career of 30 years in environmental health, including 28 years as co-editor-in-chief of this journal, I am struck by a kaleidoscope of thoughts, emotions, and nostalgia, and in juxtaposition to these remembrances, a new perspective on the future. As the field of environmental health continues to expand as both a scientific discipline and a global movement, I feel that there are some major components which it must enthusiastically encompass if the field is to continue to provide real answers to the most pressing environmental health issues of our day.     

Family food practices: relationships,materiality and the everyday at the end of life

This article draws on data from a research project that combined participant observation with in‐depth interviews to explore family relationships and experiences of everyday life during life‐threatening illness. In it I suggest that death has often been theorised in ways that make its ‘mundane’ practices less discernible. As a means to foreground the everyday, and to demonstrate its importance to the study of dying, this article explores the (re)negotiation of food and eating in families facing the end of life. Three themes that emerged from the study's broader focus on family life are discussed: ‘food talk’ and making sense of illness; food, family and identity; and food ‘fights’. Together the findings illustrate the material, social and symbolic ways in which food acts relationally in the context of dying, extending conceptual work on materiality in death studies in novel directions. The article also contributes new empirical insights to a limited sociological literature on food, families and terminal illness, building on work that theorises the entanglements of materiality, food, bodies and care. The article concludes by highlighting the analytical value of everyday materialities such as food practices for future research on dying as a relational experience.     

Illness as unhomelike being-in-the-world? Phenomenology and medical practice

Scientific medicine has been successful by ways of an ever more detailed understanding and mastering of bodily functions and dysfunctions. Biomedical research promises new triumphs, but discontent with medical practice is all around. Since several decades this has been acknowledged and discussed. The philosophical traditions of phenomenology and hermeneutics have been proposed as promising ways to approach medical practice, by ways of a richer understanding of the meaning structures of health and illness. In 2000, Swedish philosopher Fredrik Svenaeus published a book where he proposes that the phenomenological hermeneutics of Martin Heidegger and also the reflections on health and illness of Hans-Georg Gadamer offer important ways to approach the nature of medicine. In particular, Svenaeus argues that the goal of medicine is to promote and restore health, and that health ought to be seen as “homelike being-in-the-world”. Unhealth, illness, consequently should be understood as a situation where a person’s “being-in-the-world” in characterized by that lack of the rhythm, balance and “tune” of everyday living that characterizes not “being at home”. In this article, Svenaeus’ position is briefly outlined. Questions are raised whether “unhomelikeness” is to be seen as a metaphor, and, if so, if it is a fruitful such. Furthermore, I discuss whether or not a discourse on health and illness in these terms may be misleading in a situation where the ontological presuppositions of Heidegger are lost out of sight and the popular understanding of health psychology predominates. I also approach the question whether Svenaeus’ assumptions may inadvertently lead us to an unjustifiably broad understanding of the tasks of medicine. It is finally concluded that Svenaeus phenomenological and hermeneutical approach is both interesting and promising. There are, however, several questions that ought to be pursued further, and the step from philosophical analysis to everyday clinical discourse may be unexpectedly long and risky.     

Men,masculinities and diabetes: ‘doing gender’ in Italian men’s narratives of chronic illness

There has been a growing interest in the study of masculinity and its intersection with health. However, and despite epidemiological data showing men’s general disadvantage in health, there are only a few empirical studies that explore men’s experiences of chronic illness. Drawing on empirical data collected in qualitative research on masculinity and autoimmune diabetes, this article investigates the multiple ways in which gender may intersect with health, in an attempt to go beyond the widespread thesis that ‘masculinity is bad for men’s health’. In line with more recent critical perspectives on the study of men’s health that have challenged this oversimplistic assumption, this work further problematises masculinity in relation to health and illness. In-depth interviews have been conducted with 40 young/adult diabetic men from working/middle-class backgrounds. The findings show that gender might intersect health in complex ways and diabetic men can embody and re-signify health practices in order to fulfil or redefine dominant ideals of masculinity. From the analysis, three different ‘diabetic masculinities’ have been identified and will be discussed: the Diabetic Quantified Self, the Athlete and the Free Spirit.     

The risk of being ‘too honest’: drug use,stigma and pregnancy

In this article, I examine the ways in which risk is constructed and managed by those involved in the pregnancy and childbirth of women who use drugs, including the women themselves. I discuss how constructions of risk influence maternal care outcomes and the understanding of choice, often in the form of stigmatisation. In this article, I draw on data from a qualitative research study that I conducted in 2011 in a western Canada city in which I interviewed 13 pregnant and parenting women who had used drugs during their pregnancy. In this article, I show how the everyday risk construction of pregnancy, labour and delivery is compounded significantly by drug use and the stigmatisation associated with this perceived risk-taking behaviour. The participants in the study often internalised this understanding of risk and this manifested itself in delays in accessing maternal health and social care services. The women in the study had different understandings of risk and these were structured by the women’s own understanding of general risk factors during their pregnancy, as well as their experiences of the constructions of risk and risk management by health and social care professionals. While structural life chances can constrain women’s feelings of self-efficacy, services that promote clients’ ability to make choices can facilitate reduced stigmatisation and facilitate the development of more compassionate and autonomous approaches to risk management.     

Patients‐in‐waiting or chronically healthy individuals? People with elevated cholesterol talk about risk

Risk adopts an ambiguous position between health and illness/disease and is culturally salient in various health‐related everyday practices. Previous research on risk experience has mostly focused on the illness/disease side of this risk ambiguity. Persons at risk have typically been defined as patients (of some kind) and their condition as a form of proto‐illness. To allow for the cultural proliferation of health risk and to account for the health side of risk ambiguity, I chose to focus on elevated cholesterol, a condition both intensely medicalised and connected to the everyday practice of eating, among participants (n = 14) recruited from a consumer panel and approached not as patients, but as individuals concerned about their cholesterol. Utilising the biographical disruption framework developed by Bury, I show how the risk experience of my participants differed from the chronic illness experience. Instead of patients‐in‐waiting suffering from a proto‐illness, they presented themselves as ‘chronically healthy individuals’ (Varul 2010), actively trying to avoid becoming patients through a responsible regimen of personal health care. The results call for a more nuanced approach to the risk experience, which accounts for both sides of the risk ambiguity.     

Illness beliefs in schizophrenia

Beliefs about health and illness shape emotional responses to illness, health-related behaviour and relationships with health-care providers in physical illness. Researchers are beginning to study the illness beliefs of people with psychosis, primarily using models developed in relation to physical illness. It is likely that modifications to these models will be necessary if they are to apply to mental disorders, and it is probable that some of the assumptions underlying the models will be inappropriate. In particular, different dimensions of understanding may be present in mental illness in comparison to those identified in physical illness. The present study examines the beliefs of 20 patients in the UK diagnosed with schizophrenia, including 10 currently psychotic inpatients and 10 outpatients in remission, about their experiences, using qualitative interviews and thematic analysis. Patients currently experiencing psychosis did not identify their experiences as separable 'illnesses' and did not have 'illness beliefs'. Patients currently in a period of remission appraised their experiences as distinct from their own normal behaviour, but used conceptual frameworks of understanding that deviated significantly from conventional 'health belief' models. Patients' ways of understanding mental illness did not parallel those described in physical illnesses. Methods for assessing beliefs about mental illness should therefore not be transferred directly from studies of beliefs about physical illness, but should be tailored to the nature of patients' beliefs about mental illness.     

Metalworking fluids: oil mist and beyond

This article is based upon my own experiences with metalworking fluids and the adverse health effects and medical conditions associated with exposure to metalworking fluids. I have researched and witnessed the benefits that can be achieved when metalworking fluids are properly maintained and managed. My experiences have provided insight into how a shop operates, including comprehension of the equipment used, processes, mist generating points, engineering controls currently being adopted, and procedures that are used to maintain metalworking fluids. I have been able to share my personal experiences with the country's leading experts in the field of metalworking fluids. I have presented my insights on the topic in Washington, D.C., to the Standard Advisory Committee of OSHA, as well as at many other conferences nationwide. I have provided awareness training for a number of union and nonunion workers. Being a part of developing successful metal removal fluid programs, I realize the importance of transferring and sharing information. Many times an organization is not fully aware of certain conditions and how to combat them. My mission and intent is to properly educate those who are exposed to the harm that metalworking fluids can invoke and to inform those involved of the possible methods of reducing long- and short-term risk. One thing that must be kept in mind is the way we view these fluids. Many shops categorize the fluids as a type of "operating expense" when they should actually be seen as a sort of investment. Just as performing a scheduled maintenance on a machine promises the best possible longevity of that machine, the upkeep of metalworking fluid also provides longer "tool life." Monitoring and maintaining the fluids also provides for more effective and efficient productivity. If we fail to consider that proper management of the fluids can cut cost dramatically, then we will miss out on the financial impact they can have on a company. Try looking at the fluids as a liquid tool. Doing so I believe will bring a better understanding of the value of a successful metalworking fluids program. With this new understanding, it can be seen just who must play a role in the management of metalworking fluids. The employees who deal with the daily tasks involving the coolant play a major part. They are on the floor where these metalworking fluids are being used. In many shops, it is assumed that the environmental health & safety departments are responsible for standard operating procedures and management of fluids. The EH&S department should only be responsible for the protection from exposure and the transfer of information regarding policy and procedure to their employees. Not all shops have the resources required to develop and implement the proper standard operating procedure. Therefore, we must understand that what is feasible for one may not be for another. Companies that lack the sufficient resources should not be neglected. It is crucial that awareness of proper standard operating procedure is shared with everyone involved with the fluids in order to provide proper metalworking fluids management. Fluids are as dynamic as the formulations themselves (complex & dynamic). These fluids can quickly become contaminated with foreign materials and chemicals, thereby become aerosolized into mist. With proper education and training, one will be able to control what gets aerosolized.