Chronic Illness, Vulnerability and Social Work

Autoimmunity and the contemporary disease experience

Liz Price, Liz Walker

• Publisher: Routledge
• Year: 2015
• Print ISBN: 9780415643535
• eBook ISBN: 9781136165450
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Whilst the body has recently assumed greater sociological significance, there has been less engagement in social work and social care on the bodily experience of health, illness and disease. This innovative volume redresses the balance by exploring chronic illness and social work, through the specific lens of autoimmunity, engaging in wider debates around vulnerability, resistance and the lived experience of ongoing ill-health.

Moving beyond existing conceptualisations of vulnerability as an issue of mental distress, ageing, child protection and poverty, Price and Walker demonstrate the role that society has to play in actively engaging the physical body, rather than working around and through it. The book focuses on auto-immune conditions such as lupus, multiple sclerosis, rheumatoid arthritis and scleroderma. Conditions like these allow for an exploration of the materiality of illness which exacerbates social and economic vulnerability and may precipitate personal and social crises, requiring a variety of interventions and support. The risks and challenges associated with chronic illness include disruptions to a sense of self and identity, altered relationships and the renegotiation of roles and responsibilities in a variety of relationships in addition to an economic impact, with the potential for disruption to employment status and financial insecurity.

This text opens up a range of debates around some of the central concerns of the social work profession, including vulnerability, ill-health, and independence. It will be of interest to scholars and students of social work, nursing, disability studies, medicine and the social sciences.

1
‘I am my own worst enemy’

Autoimmunity: diseases of the ‘self’

In our introduction, we stated that this book focuses on what happens when the human immune system goes awry and in this opening chapter we begin to chart the ways in which it works to cause, rather than defeat, illness and disease. We employ this understanding as a foundation from which to explore the wider personal, social and political issues that can arise from the seemingly innocuous work of T cells, B cells and antibodies. We draw, in particular, on the work of medical sociologists and anthropologists who have mapped and theorised the experience of living with illness for which there is no cure. We employ this body of work as a foundation on which to build a conceptually cohesive framework to understand the experience of autoimmunity that, we suggest, is a particular point (and a very particular experience) where our biological and social selves come inexorably together.

Autoimmune conditions demand that, as human beings, we carefully consider our place in the world and complex relationship to and with it because, as we will demonstrate, the world can be perceived as a dangerous and risky place filled with all manner of possible biological (and social) enemies that must be actively resisted. As we will argue, in the process of partitioning ourselves so effectively off from the biological realities of the world beyond the body, the body, so ardently defensive, looks inward for self-generated threats and enemies. The critical point here, and one of our central themes throughout this chapter, is the profound existential and ontological threat an autoimmune condition may pose, given that it is our very sense (and biological experience) of self that these conditions so profoundly undermine – the body is, to employ a much-used military analogue in the context of autoimmunity, at war with itself. That is to say that, in autoimmunity, the biological self is (and actively becomes) pathogenic. The experience of the respondents who took part in our study and others (see, for example, Anderson and Mackay, 2014b) suggest that, in the face of this threat, people work very hard to reconstitute and rebuild the personal and social selves that are the collateral damage of these conditions.

This chapter thus explores the notion of the rejection of ‘self’ and the various implications this may have for a person’s biological and social experience – the ‘vital paradox’ (Cohen, 2004: 7) lived day-to-day by people who have autoimmune conditions.

Autoimmunity and the contemporary disease experience

The human immune system is a complex network of cells, organs and tissues that combine to work to protect the body from ‘invasion’ from natural (and man-made) pathogens. It is an evolved mechanism for enabling the body to discriminate between self and non-self constituents (Górski et al., 2001). Indeed, this fundamental distinction and the focus on self/non-self and identity lies at the heart of the field of immunology. The way in which the immune system operates is based, largely, upon the identification of those entities that can undermine human health and well-being that occupy the spaces in and alongside us. These entities or ‘invaders’ are, ordinarily, bacteria, viruses, parasites or fungi that can cause infection and disease. The immune system works to keep out these foreign entities or, alternatively, once they enter the body, seeks them out to destroy them. The ‘innate’ immune system (common to all animals) is the first line of defence. The innate immune system works by greeting bacterial ingress with white blood cells containing cells known as macrophages, which actively seek out and destroy bacteria. In humans, the innate immune system is complemented by the rather more sophisticated ‘adaptive’ immune system, most probably generated as a response to viruses, which the innate immune system is less capable of managing. In short, the adaptive immune system generates certain types of cells that, having identified a foreign invader, ‘tag’ it for destruction. This is done by other, specially adapted, cells (T and B cells). The system has adapted to recognise and remember specific pathogens so that, should the body be repeatedly invaded, it is able to kill the uninvited pathogens before they are able to create disease.

The immune system is at once hugely sophisticated, yet remarkably fallible in that it is able to identify and destroy a large range of potential infection-causing agents yet, sometimes, when it identifies harmless pathogens, including a range of naturally occurring allergens (such a pollen or animal hair), that it perceives to be a threat, it can inappropriately unleash a response that is, at best, unpleasant and, at worst, life-threatening. Moreover, and particularly apposite in the context of this book, the human immune system can also, contrary to the belief in the first half of the twentieth century that it was entirely benign, turn on itself. In this context, instead of producing antibodies to ‘invaders’, the human immune system produces ‘auto-antibodies’, that is, antibodies to itself – it thus perceives human tissue to be pathogenic, mounting, in effect, an immune response to self.

While normally acquired immunity is carefully regulated so that it is not induced against components of ‘self’, for various reasons, when this regulation is defective, an immune response against ‘self’ is mounted. This type of immune response is termed ‘autoimmunity’.

(Benjamini and Leskowitz, 1988, quoted in Napier, 2012: 123)

The various effects of this immune response to self, known collectively as autoimmune conditions, can affect any part of the human body and, accordingly, when this happens, the potential impacts are many and varied. A conservative estimate would suggest that 5–8 per cent of people living in developed countries (this estimate is based on North American figures) may be living with an autoimmune condition and there are more than 100 autoimmune diseases currently recognised. Some of these conditions demonstrate a high population prevalence, such as rheumatoid arthritis and Sjögren’s syndrome, while others, such as lupus, multiple sclerosis and type 1 diabetes, demonstrate a high population mortality (Rose and Mackay, 2014).

Despite the depth of understanding evident in the medical literature as to the workings of both the innate and acquired human immune response, the aetiology of autoimmunity has proved elusive and difficult to determine. Genetics, the environment, personality type, life changes and disruption, and the extreme effects of stress have all been linked to autoimmunity but, to date, there is no definitive answer that would explain why the human body should respond to itself in this way. While the range of autoimmune conditions present themselves very differently (both symptomatically and experientially), there are a number of common factors, paradoxically, and principally, the unpredictability and fluidity of their symptomatology and the fact that they are, for the most part, chronic conditions that are not cured but are managed (sometimes successfully, sometimes not) for the remainder of a person’s life. In many, if not all, autoimmune diseases, symptoms come and go, moving into and out of focus, sometimes on a daily basis. They are notoriously clinically ambiguous and are the archetypal mimics and shape-shifters of the medical world.

As such, the experience of having, diagnosing and treating these conditions is enigmatic, to say the least. Autoimmunity is, put simply, a failure of the body to tolerate itself and, with this in mind, in the following pages, we explore the implications of this for people who are patently and demonstrably at odds with ‘themselves’. We are interested to understand what this apparent failure of tolerance means in physiological and, more intriguingly from our perspective, social, economic and psychological contexts.

As noted above, it is only in approximately the past 50 years that the human immune system and its various aberrations and complications has come in for sustained attention. The very existence of autoimmunity was effectively in doubt until the late 1960s (Silverstein, 2014). Previous to this, the human immune system was considered inviolate. That is, as we have noted above, that it was not thought possible to confuse ‘self’ with ‘non-self’ or ‘other’. Indeed, it is this distinction, or lack of, that lies at the heart of autoimmune pathology. It was, in fact, during the 1960s that the notion of an immune ‘system’ first appeared, marking a critical conceptual shift in the ways in which immunity was understood. The body was now not only responsible for reactions to allergens and pathogens, but was seen to have the ability to mount ‘a cellular defense in which complex responses protected an autonomous self’ (Napier, 2012: 118). The underlying assumption being, therefore, that the immune system works to simply identify and eliminate foreign ‘invaders’. The elimination of difference thus sat at the heart of these dominant assumptions (Napier, 2003).

This is not to say that the notion of autoimmunity had not been considered up until this point. The early years of the twentieth century saw a number of discoveries that centred on a human autoimmune response, such as the discovery of paroxysmal cold haemoglobinuria – a rare condition in which there is an abrupt onset of systemic symptoms following exposure to cold temperatures (Donath and Lansteiner, 1904, cited in Silverstein, 2014). Further, one of the first to suggest that the human body might mount a biological attack upon itself was Paul Ehrlich who, in the context of experimenting in the wider field of immunology, coined the notion of ‘horror autotoxicus’, pointing out that the human organism ‘possesses certain contrivances by means of which the immunity reaction, so easily produced (induced) by all kinds of cells, is prevented from acting against the organism’s own elements and so giving rise to autotoxins … so that one might be justified in speaking of a “horror autotoxicus” of the organism’ (quoted in Gallagher et al., 1995: 50). That is, the organism is so ‘horrified’ by the notion of attacking itself that it will simply not occur.

The concept of autoimmunity was, thus, given relatively short shrift by a medical profession unwilling to overthrow the received wisdom that perceived the human immune system to be inviolate. Silverstein (2014) suggests that one of the reasons for this reticence was not the fact that the existence of autoimmunity was necessarily in doubt, rather, that this understanding did not fit the prevailing medial paradigm and that to address the issue would have been to challenge some of medicine’s critical underpinning premises

acceptance of a fact in science depends less upon its truth than upon its acknowledgement by the leaders in the discipline.

(Fleck, 1979, cited in Silverstein, 2014: 11)

The road to a more comprehensive understanding of the autoimmune response was long and slow but, by the middle of the twentieth century, a number of developments in the field of immunology could no longer be ignored. Animal studies in immunology were suggesting a mammalian autoimmune response (particularly in the study of thyroid disease) and, as a result, research began to uncover the basis of what we now know to be autoimmunity. Frank Macfarlane Burnet was, perhaps, the first to provide a theoretical basis for the concept of autoimmunity (Burnet, 1959) and he and Ian Reay Mackay subsequently published the first monograph that focused solely on the notion (Mackay and Burnett, 1963). They noted that autoimmunity could present in one or many organs (i.e., it was a systemic problem), that genetic factors were commonly seen, that these conditions had a female predominance and often had a fluctuating course – their work effectively marked the beginning of the science of autoimmunity (Roberts-Thompson et al., 2012). In the context of our interest in the ways in which self and non-self are ineffectively delineated in autoimmune conditions, Burnet’s work is of particular importance. He was one of the first to focus, in detail, on the reasons why the body might produce antibodies to itself. For Burnet, it was not the human body’s ability to defend itself against external pathogens that excited his interest, but the more philosophical question of how and why the body becomes unable to discriminate between self and pathogen. Anderson and Mackay (2014a: 148) suggest that, for Burnet, ‘recognition of self represented the fundamental biological problem’ and his interest in the philosophy of this biological conundrum effectively centred the notion of autoimmunity in the field of immunology.

What autoimmune conditions do, then, is to violate ‘the categorical imperative not only of immunology but of most Western epistemology: self is self and not-self is not-self and ne’re the twain shall meet’ (Cohen, 2004: 7). The body, in this context, is perceived to be a coherent container of ‘self’ that is abstracted from its wider ecological context, a context that is seemingly inherently dangerous and risky and one that impels us to vigorously and vigilantly maintain our regulatory biological systems and borders at all times. It is a world full of potential invaders. This perspective, however, presupposes that, as those same human beings, we are separate and distinct from the world in which we reside and upon which we so obviously depend. Cohen (2009: 26) asks ‘How did we come to believe that as living beings, “the body” separates us from each other and from the world rather than connects us’. After Cohen (2004) we would also refer to the work of Varela (1991) who makes this point succinctly when he describes

the intriguing paradoxicality proper to an autonomous identity: the living system must distinguish itself from its environment, while at the same time maintaining its coupling; this linkage cannot be detached since it is against this very environment from which the organism arises, comes forth.

(Varela, 1991: 85)

The ways in which biology and philosophy so clearly marry in this context is, perhaps, one of the reasons why the notion of autoimmunity, referred to by Anderson and Mackay (2014a: 167) as ‘the dark side of immunology’, is so challenging to understand (and explain to others) and is a concept quite alien to our understanding of ourselves and our corporeal and social relationship with that self and the world in which it so symbiotically resides.¹ Matzinger (1994) provides a nuanced and ecologically persuasive explanation (and rejection) of the self/non-self paradigm that, she suggests, might have obfuscated the reasons why autoimmunity occurs in humans. She suggests that, rather than perceiving the world as one that consists of self and other (non-self), it is more useful to think of the dangers inherent in the events that stress the body rather than external ‘things’ that might threaten it. Matzinger’s body of work provided a critical challenge to the perceived wisdoms of immunology and, in so doing, offered a view of the human body and its biological agency that is intimately connected to, not removed from, the world in which it exists. Cohen (2004: 10) provides an elegant overview of what this means in practice. Matzinger, he states ‘helps reimagine the organism as a concatenation of biochemical transformations of energy and matter localised in the space/time which we call a life, rather than as a permeable frontier that needs to be defended’. Matzinger’s (1994) call to reconnect us to our environment is particularly apt (and poignant) in the context of late modernity, wherein the boundaries delineating self, society and the world in which they exist are, arguably, increasingly diffuse and permeable. This permeability, of course, is not one that reflects an appreciation of the ecological context in which we live, and the symbiotic relationship we share with our environment. Rather, it is one based on a keen awareness of the dangers the world poses to our state of being. Our relationship with the world, therefore, is based on fear and risk, ambiguity, insecurity, indecision and fragmentation (Bauman, 2000). We would suggest, then, that the nature and experience of autoimmune conditions are emblematic of Bauman’s notion of ‘liquid modernity’, which underpins an understanding of illness predicated on physical and existential uncertainty and significant states of flux (although we would caution a literal transposition of this notion given, as we will argue later, that the power structures that underpin illness and professional responses to it are tenacious and very resistant to change. That is, while policy imperatives and the political will may impel change in the medical field, the resulting sense of fluidity is, perhaps, more viscous than we might imagine).

In a society in which there are endless possibilities and myriad ways in which the boundaries of health and disease are variously drawn, the distinctions between health and illness become blurred and difficult to distinguish. Illness and disease, rather than being something exceptional that is contracted or acquired, seems to have no appreciable linear narrative. That is, there is no beginning, middle or end to it. Rather ‘it tends to be seen as a permanent accompaniment of health, its “other side” and an always present threat’ (Bauman, 2000: 79). Autoimmune conditions are, themselves, emblematic of this. The physiological and social circumstances that may generate autoimmune responses are difficult to quantify and isolate and the experience of having an autoimmune disease is akin to existing on this shifting health/illness continuum, wherein on any given day, the person may feel relatively healthy, the next very ill. The boundaries of health and illness, the ways in which self and non-self permeate and are subsumed into everyday lif...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of figures
• Acknowledgements
• Introduction
• 1 ‘I am my own worst enemy’: autoimmunity: diseases of the ‘self’
• 2 Diagnostic vertigo: naming the illness experience
• 3 Patients, professionals and the clinical encounter – making the connections
• 4 A life lived with lupus
• 5 Foreclosed futures and lost pasts: reconstituting a salvaged self
• 6 Digital illness
• 7 Situating the family in the experience of chronic illness
• 8 Body work in social work
• Conclusion
• Appendix: notes on research methodology
• Index