Abstract and Keywords
This book is the story of twelve people, each living with illness. Based on ethnographic research conducted over one year, it unfolds everyday experiences of living with a long term physical or mental health condition. In doing so, the book offers an innovative account of the body, health and illness in everyday life told from a sociological perspective.
This book is the story of twelve people, each living with illness. Based on ethnographic research conducted over one year, it unfolds everyday experiences of living with a long-term physical or mental health condition, from asthma to bipolar disorder, depression, type 1 diabetes, epilepsy, joint hypermobility syndrome, muscular dystrophy and rheumatoid arthritis. In doing so, the book offers an innovative account of the body, health and illness in everyday life told from a sociological perspective. This account is not based on anguish, isolation and powerlessness but on the refusal to be crushed by illness, as Havi Carel (2008) writes, it is possible to find health, and happiness, within illness. Paying attention to the routine and unfolding aspects of embodied everyday life, the book aims to highlight the moments of care and repair through which people make their lives liveable. Learning from the lives portrayed, it explores ideas of care, vulnerability and choice, questioning what it means to live a modern life with illness and illuminating the vitality of bodies along the way.
In writing this book, I hope to bring into question what might be at stake in the care of ordinary bodies. Delving into the routines and rhythms of everyday life reveals the significance of the things that we usually take for granted, from what we eat to when we sleep, how we move and what we wear. Close attention to concealing strategies and rituals of care (a particular choice of clothing, the preparation of a meal) unfolds the relationship between the practical and ongoing achievement of living with illness, vulnerability and bodily doubt, and the felt politics of stigma in everyday life. Told from different perspectives, it shows how these mundane and seemingly simple aspects of living are complicated by illness, and made in/visible by the ways in which they are written on the body.
In doing so, the book shows how and why everyday life matters. To the participants in the study this is glaringly obvious; in illness, the body no longer lies beneath our everyday perception, and it is no longer possible to take it for granted. The certainty that our bodies will behave and that our time is our own dissipates. Instead of being absent, forgotten or quiet, the ill body is present, unforgettable and communicative. As Mariam Fraser and Monica Greco (2005: 20) write,
We notice our body when the sudden or progressive impairment of one of its functions interferes with our daily activities, disturbing the order we take for granted. A leg (p.2) that will no longer walk, an eye that will no longer see, a heart that strains to run a familiar stretch, impose themselves on our attention as they transform our customary relation to the world.
In illness, mundane and ordinary acts become significant and remarkable, highlighting the raw and deep realities of our existence. The bleed between private and public spheres of life, the pretence of invisibility, the need for care and control, each reveal something of the daily reality of living with a chronic condition and act as reminders of our vulnerability and our mortality. It becomes important to ask what is at stake in our daily encounters.
While doctors, medical tests and hospital appointments all figure in these accounts, the book focuses primarily on the ways in which people learn to live with illness and take care of themselves, what Les Back (2015: 821) calls the ‘ordinary triumphs of getting by’. This is because long-term illnesses often defy medicine. Unlike acute illnesses, which start suddenly and are quickly recovered from, or terminal illnesses, which loom with the certainty of death, long-term illnesses are neither transient nor final. They can be hard to diagnose and impossible to cure, they can flare up and retreat, but they never disappear completely. They are lived, throughout the life course. As such, it makes sense to study long-term conditions through the daily realities of self-management and self-care, and, like the participants in the study, to look to everyday life for answers. While medical accounts often treat these conditions individually, there are many commonalities across the spectrum of long-term illness, and the book also seeks to show the commonalities between different long-term conditions, bodies and lives.
These vital bodies are brought to the pages of this book with the help of the twelve people who took part in the study, in their spoken words and written thoughts, as well as drawings, photographs and video diaries. Bringing these gifts together, the book is an attempt to share experiences, insights and intimate moments, to recognise difficulties and to celebrate accomplishments. Each chapter combines thick descriptions, interview quotations, journal extracts and video diary footage in order to explore how individual lives are interconnected. These chapters are a form of portraiture, an account of life as it unfolds, and a way of evoking intimacy. At night, in rituals of care, and in memories and reflections, they offer a series of intimate encounters with the sensuous, the tangible and the intangible sensation of living with illness. These stories are collected as examples, not evidence. They are examples that are attentive to the unruly details of ill bodies (p.3) and the difficulties of everyday life, and they are drawn together in order to make connections and evoke experiences that others might relate to. As such, these accounts are written and illustrated in ways that I hope will make them open, recognisable and legible both to the people whose lives they are based on and to a broad readership. These partial accounts are offered as a series of fragments, and the aim is not to indicate unfortunate gaps but rather to present an imperfect account (Clifford, 1986: 8). These accounts are also translations, and like any translation they are at risk of falling flat or missing the right note. As John Ciardi (2013: ix) writes of the act of translating between languages:
When the violin repeats what the piano has just played, it cannot make the same sounds and it can only approximate the same chords. It can, however, make recognisably the same ‘music’, the same air. But it can only do so when it is as faithful to the self-logic of the violin as it is to the self-logic of the piano.
This book, then, is concerned with listening, in two different ways. Sociology is a listener’s art (Back, 2007), and the ways in which I learned to listen to these accounts and bring them to attention are outlined in the methodological appendix. But listening to the body is also something that all of the participants are attentive to, in their own ways, and the book is concerned with the ways in which they have learned to listen to the ill body as it murmurs, shouts and screams for what it needs or wants. In both living lives with illness and in taking part in this study, the participants became observers, or listeners, and it is through their accounts that we come to know their day-today worlds. In an attempt not to mistranslate their experiences, the book moves between the participants’ words and my own, drawing on their voices while offering contextual support and sociological interpretation. In a study of repeated acts of stethoscopic listening to heart sounds or ‘murmurs’, Tom Rice (2008) shows how repeated medical practices of listening can reify and isolate aspects of the body, turning them into objectified clinical cases. His example provides a useful counterpoint to the listening practices in this book, which are more subjective and familiar.
One of the aims of writing this book has been to portray personal accounts, and to make illness less anonymous. But all of the names in this book are fictitious – each one begins with the letter ‘A’ to remind the reader of this anonymity. As Tom Hall (2017: 19) writes, ‘who sees who and on what terms, who sees their (own) name in print – has to (p.4) be managed’. Pseudonyms are used to protect individual identities and to afford some privacy, while making lives visible.
The first three chapters take inspiration from one of the participants’ mantras. ‘Fish, exercise, sleep’ is a phrase that Ava repeats in her head and sometimes writes down; it is a code for living which helps her recalibrate so that everything else can fall into place. The first chapter, ‘Eat’, focuses on the importance of diet, showing how the basic need to eat can become a defining feature of our lives, whether we are calculating carbohydrates, seeking the nutrition that our bodies need, or controlling their shape and size. Through eating, the processes and practices that create routines, rules, cures and rituals of care become visible, and the ways in which the body is reconfigured by its material needs become apparent. As a significant form of managing illness, eating is a way of caring for the body, but it is one that creates conflict, turning eating into a duty and a reward. Ava has rheumatoid arthritis. In her search for a magic bullet to cure her of her daily aches and pains, she has consulted nutritionists, bought supplements, subscribed to diet and nutrition email lists, and read countless magazines, books and websites. Disciplined eating forms part of Ava’s strategy for health, and routines structured around food provide a sense of security and control, revealing significant dedication to caring for the body.
The second chapter, ‘Exercise’, considers the rhythm of our bodies in motion and the complicated relationships between exercise and illness, as both a necessity and a joy. Like eating, the significance of exercise is redefined by illness, and the body is maintained, challenged and reknown through it. Exercise regimes can provide control, treatment and an alternative form of medication so that through physical activity bodies feel strong, independent and free in spite of illness. But ill bodies are prone to overexertion, and exercise can reinforce their dependence and vulnerability as well as their strength. For Anna, who has depression, exercise has become a form of self-medication. Running and cycling regularly make her feel less depressed, so she tries to be physically active at least four times a week. Disruption to this routine can cause her mood to plummet quickly, showing the dependence that she has on her body.
The third chapter, ‘Sleep’, looks at how the demands of our working and social lives can conflict with the demands of our body, and at how illness redefines our lives through the need to sleep. While rest is sometimes the best cure for illness, sleep clashes with social expectations, destroys routines and causes conflicts. The need to sleep is perhaps the most delicate revelation of the body’s vulnerability, and bodies that need more sleep simply do not fit in with the demands of modern life. (p.5) As such, they present themselves as things that demand care, that are frail and difficult to manage. Aiden has rheumatoid arthritis and rest is a better cure than any drug, but with a modern life in London it is the hardest thing to come by. Sometimes his body screams for sleep, to rest and rejuvenate, evidencing the conflict between how Aiden wants to live and what his body needs.
The fourth chapter, ‘Genes and organs’ examines how the interiors of our bodies structure and influence our exterior surfaces and identities and shape our daily lives, and how the inner workings of our bodies, the circulations of blood and the flows of air, affect and betray us. This chapter traces the transmission of conditions from their interior origins within the body to the outside world of everyday life and considers how the inner landscapes of the body are both visible and significant. Ami has asthma. She has learned the warning signals of an asthma attack, from the wheezing sound originating from her chest, to the tight feeling in her shoulders, and the sudden pain in her teeth. She knows when to take her inhaler, and she also knows when to reach for the phone and call the emergency services. In moments like these, illness is transported from the safe and invisible interior of the body to the outside world.
Moving from the interior to the exterior, the book continues with the fifth chapter, ‘Feet and legs’, body parts that, as our connection to the earth and our way of navigating through the world, are perhaps our most direct link to the landscapes in which we live. How do our feet and legs, as well as the shoes and canes that accompany them, connect us to, negotiate us through, and redefine how we know the built environment? How do our bodies redefine the topography of our worlds? This chapter considers the importance of these seemingly simple body parts and the influence that they have on the ways in which we move, dress and travel. Anya has muscular dystrophy and the muscles in her legs are wasting away. But by finding new ways of using her body, and by learning her environment in detail, she has held onto her ability to walk and her independence.
The sixth chapter, ‘Hands and hearts’, considers the emotional connections between bodies, minds and landscapes, and touches on themes of finding a home and belonging in the world. Through this chapter, we see how bodies find their own routes through the spaces of everyday life, and how, just as illness refuses to be contained within bodies, bodies refuse to be confined by illness. Anna, who has depression, does not have any of the same doubts about her hands as she does about her mind and its thoughts. She never thinks twice about their ability to do things, and they do not seem to suffer from the same (p.6) anxiety and self-hatred that she does. Anna’s acute mind‒body split illustrates how she belongs in the world through her body and at the same time feels distant from it.
Up to a point, the book is based on ‘snapshots’. These ‘images taken (out) of passing life’ (Hall, 2017: 7) were all collected together over one year, and while some of the methods that were used drew out longer life histories and trajectories, the interviews, journals, images and video diaries could only ever hope to provide a momentary glimpse into the lived realities of living with illness. But, in the summer of 2016, seven years after the original study was conducted, I contacted the participants again. I had not set out to conduct longitudinal research, but the process of writing this book threw up an unexpected opportunity to return to their lives and ask how they were living now, what had changed, and what had remained the same. Just as cultures (Clifford, 1986: 10) and cities (Back and Keith, 2014: 25) do not hold still for their portraits, neither do people, and as I found out, many of the participants had moved on or away, meaning it was not always possible to meet in person. Nor had their illnesses held still, as we will see.
Despite the passage of time, eight of the twelve participants responded to my invitation to meet again, and follow-up interviews were conducted in various locations across London, in other cities, and, when it was not possible to meet in person, by online conversations. Recalling the Up documentary series produced by Granada Television, which has followed the lives of fourteen British children every seven years since 1964, when they were seven years old, each chapter begins with findings from the original study and ends with insights from the follow-up study, enfolding and unfolding embodied life as it is lived through time. The passage of seven years makes the relationship between life, illness and time apparent, illuminating the ups and downs of everyday life, and the ebbs and flows of illness.
The book ends with two more academic chapters, in the form of a conclusion and a methodological appendix. Learning from the lives portrayed, the conclusion seeks to relate some of these findings to other literatures and ways of thinking about illness in more detail, providing some evidence for the arguments that the book makes and offering a more theoretical discussion. The appendix provides more detail about how the study was conducted, and offers some craft lessons in visual sociology and sensuous scholarship, told through illustrative fieldwork tales.