What Do We Talk About When We Talk About Disease?

What Do We Talk About When We Talk About Disease? Harry Quinn Schone University College London Philosophy of Medicine !1 I, Harry Quinn Schone, confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ !2 Abstract This is a thesis about classification and disease, our expectations as lay-people and patients as to where the borders of illness lie, and the consequences of such expectations. In Chapter I the discussion is framed with a critical analysis of common terms and concepts employed in the social, historical and philosophical study of disease. Chapter II revolves around a critique of sections of the philosophy of medicine literature, based upon the notion that any attempt at a ‘universal’ definition of disease is likely to fail. Chapter III introduces and appraises the work of three thinkers - Edward Shorter, Elaine Showalter and Ian Hacking - in order to give more historical weight to the case study which follows. In Chapter IV, the final chapter, the main body of evidence is presented. The condition under examination is fibromyalgia and the bones of the chapter come from twenty-two semi-structured interviews with patients about their experiences. It is argued that disease definition is not a procedure conducted in the abstract but rather a fleshy, intuitive process that all of us, specialist or not, partake in. It is demonstrated that certain expectations of disease exists among the population - what it should look like, what it should act like - and that these expectations have a greater role in constructing a patient’s identity than is often assumed. It is suggest- ed that a patient might find themselves in harmony with their institutional category, have a pleasant and working relationship with their doctor, but still exist in total discord with those around them on the basis of their condition, a state of affairs not adequately considered or explained by the current philosophy of medicine literature. !3 Contents Acknowledgements 5 Introduction 9 Chapter I - Key Concepts 15 Chapter II - Definitions of Disease 82 Chapter III - Shorter, Showalter, Hacking 135 Chapter IV - Fibromyalgia in Context 197 Appendix I - Methodology 309 Appendix II - Study ethics sheet 315 Bibliography 316 !4 Acknowledgements Some thanks are in order. First and foremost, thank you to all of the patients who responded to my request for help with this project. I would not have been able to complete this work without your words and insights. I wish you all well. Thank you Brendan for our walks through Bloomsbury, for your tangent-taking and intuition, your careful, constructive notes and most of all for having faith in me and my methods when others may not have done. I always looked forward to our meetings and I will miss them. Thank you Jack for your attention to detail and compassionate disparagement. I needed that. Thank you Maël for kindly taking the time to read through draft chapters and offer thoughts. Thank you to the ESRC for (mostly) leaving me alone. And thank you Chiara for saving my skin all those years ago. Thank you Phil for always lending money and never asking why. Thank you Agne for surrendering your laptop so generously. Thank you Brighton, London, Bu- dapest and Reykjavik for being my home during these salad days. Thank you Grandma, renowned master of Scrabble and corrector of library books. Thank you Ieva for making me laugh every single day. You remind me that there is more to life than books. Finally, thank you to my parents. I owe it all to you, for better or worse. !5 This work was supported by the Economic and Social Research Council. !6 ‘Pain, as a symptom of the problematic, frequently is’. Drew Leder !7 For Chris !8 Introduction This is a piece of work which aims to look in detail at the philosophical context that frames the ways contested, chronic illnesses are experienced and understood by patients in the early 21st century. Nestled inside this subject sit many concepts which require further discussion and critique, and I shall go through them in turn. The key focus of this research is to trace with greater accuracy and, more impor- tantly, greater reference to lived experience, the contours of belief and assumption which provide us with our collective map of disease. There is not an easy category in which to place this work. It is part historical, in that I utilise the writings of historians to provide insight into our contemporary concerns. It is impossible, I suppose, to understand the current state of disease beliefs prevalent across society without paying attention to the historical processes which have deposited a way of viewing and feeling disease into our collective sub- conscious. This work is also in part sociological, in that I borrow from sociology ways of listening and observing illness.1 Furthermore, sociology has given us the most substantial attempt to reject or at least reform the biomedical view of the body by highlighting the cases in which is is inappropriate and ill-fitted, and to this research I shall refer at several points. And though this work is clearly in- terdisciplinary, it is perhaps most of all philosophical. Throughout my discussions I return time and time again to fundamental questions of conceptualisation: what do we expect a disease to look like?- what prevailing notions dictate the way we are allowed to, expect ourselves to be, and in some way are ill?- to whom does epis- temic authority over these ideas belong to and originate from? I mean these questions to be read in a philosophical sense as attempts to probe be- neath the surface of our reaction to disease. In other words, how does a sick person 1 The semi-structured interviews I conducted were guided in part by previous sociological approaches to medical narratives. !9 understand their illness metaphysically, how do people around them approach it and what are the consequences of these beliefs? My argument, to be expounded greatly in the following pages, can be summarised as follows. Many, if not all, of the different concepts that philosophers associate with illness suffer a great loss of clarity under stringent investigation, and it is doubtful whether they are theoretically resilient enough to be relied on when constructing a coherent theory of disease. What does emerge from their examination, however, is a more general impression, a broad framework through which it is pos- sible to view the way disease is mediated and understood. From this we are able to envisage what shape illness takes on unconsciously, implicitly, in the imagination, the ways in which it is expected to show itself and the ways in which people and institutions are expected to relate to it. In short, the way disease operates in our society. With this idea in mind, I then introduce ‘chronic, contested illnesses’, those which do not conform to our vision, those which lie outside of our expectations. These have a long and troubled history, intermingled most often with psychiatry. They present themselves in many forms, and a fuller description will be given below. The aim is not to show that people with these conditions ‘really are’ ill, or are deserving of sympathy, though this is in my view certainly true. Rather, I want to put it that we intuitively categorise disease according to certain predispositions, and when we encounter a phenomenon which contradicts these prejudices, a gap opens up between our expectations of disease and the condition itself, the thing before us. This gap creates a tension, a painful distance, but it is not purely theoretical. On the contrary, it is precisely in this space that harm occurs. This is found institutionally, in the form of welfare disputes or dismissals from employment; interpersonally in the breakdown of trust and respect in a marriage; psychologically in the self-doubt and depression of an ill person who lacks an approved way of deciphering the way they feel in their body. !10 My thesis is that whilst much attention has been given to both analysing concepts related to disease and to investigating the relationship between institutions and in- dividuals of authority and patients, little focus has been granted philosophically to the ways in which we all - as friends, family members, colleagues, patients - con- tribute to and constitute the experience and meaning of disease. In other words, I think that the quest to define disease, to map the landscape of the doctor/patient relationship, to understand how patients interact with their condition as described to them institutionally has eschewed broader questions about the underlying meta- physical assumptions that exist in the minds of clinicians and non-specialists alike. Essentially, I say that we cannot define disease, but we can look at the ways it is de- fined, who is doing the defining, on what basis they make that distinction, and what the effects of such a demarcation are.2 The structure of this work should hopefully impart a sense of cumulation. In the first chapter I will discuss the various ways in which disease, illness and sickness have been employed conceptually, and account for my partial rejection of such dis- tinctions. Other concepts which orbit this topic will also be explored: biomedicine, malingering, issues of legitimacy, validation and the role of the patient community. The aim of this discussion is to establish a conceptual context for talking about disease, to compile a language that engages with and enhances my case-study.

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