The distinction between illness and disease is important to the sociology of diagnosis. This differentiation was not made clear in earlier sociological texts. Freidson (1972), for example, used the terms interchangeably. Today, however, the distinction contains important conceptual differences that frame discussions of diagnosis. Kleinman, Eisenberg and Good (1978) wrote about illness as the personal experience of sickness, shaped by culture and influential for health outcomes. Illness problems are those which result from undesirable changes in social or personal function. How an individual perceives these problems, explains or labels them and seeks remedy, originates from a cultural context, and in turn influences the response to, or decision to access, medical services. In any case, as Locker (1981) points out, to consider oneself ill is to presume a biological cause for a disvalued state of being.
Disease, in contrast, is framed by the biological, rather than the personal. Western medicine considers disease a biological or psychophysiological dysfunction or maladaptation (Kleinman et al. 1978). Disease is diagnosed, illness is not; rather, it is presented to a clinician as presumed disease. The transformation from illness to disease takes place via the intermediary of the doctor and the diagnosis.
Someone who feels unwell describes their sense of disorder, and recounts what ails them, constructing a narrative which describes and contextualises their complaint; this description does not in itself constitute a diagnosis. This is what Balint (1964) refers to as the patient ‘proposing’ one or many illnesses in an attempt to find one upon which patient and doctor will concur. Diagnosis is the medical reading of these symptoms: interpreting and organising them according to models and patterns recognised by the profession. Leder (1990) describes this process as a ‘clinical hermeneutic’ or interpretive project. The individual initiates an encounter with the doctor to obtain an explanatory position from which to approach the illness.
While not all illnesses can be diagnosed, their narratives are the starting point for diagnosis. Note that there is more than one narrative: both the patient's and the doctor's stories juxtapose and merge for a diagnosis to materialise. The patient's stories, emerging from his or her own experience, culture, and consideration of the role of the doctor are transformed into medical accounts upon their telling. The doctor interrogates, interprets and retells the story, establishing the ‘plot’ and a diagnostic organisation (Hunter 1991). In Leder's model, the patient has already determined that the explanation for his or her discomfort is medical in nature, and that it is a doctor (rather than a different social authority, say a rabbi or a lawyer) who will confer meaning to the narrative. Illness is the story which results when an individual sees the interpretation in terms of health and medicine. Alternatively, diagnosis is the story of medicine, told in the language of disease. ‘In the narrow biological terms of the biomedical model’, says Kleinman (1988), ‘this means that disease is reconfigured only as an alteration in biological structure or functioning’ (1988: 5–6).
Arthur Frank (1995) claims that a social expectation of being ill is not just seeking care, it is ‘a narrative surrender’ in which the patient's story is relinquished to the doctor's, told through diagnosis, and ‘the one against which others are ultimately judged true or false, useful or not’ (1995: 5–6). Kleinman maintains that doctors are taught to be sceptical of patients’ narratives about illness, a view shared by Foucault (1963), who wrote that clinical medicine sought to silence the patient's story unequivocally. ‘In order to know the truth of the pathology, the doctor must abstract the patient . . . who, by trying to show things, ends up concealing them’ (1963: 8, my translation).
The diagnosis thus confers legitimacy on illness, yet does not necessarily align with the patient's narrative for a number of reasons, not the least of which is the position from which the stories are recounted. Illness narratives ‘reveal what life is like for the narrator . . . [including] the practical consequences of managing symptoms, reduced mobility and so on. In telling their story, individuals also reveal, or indeed may assert, their self and social identity’ (Nettleton et al. 2004: 49). Medical narratives come from an institutional position, which presumes the absence of the lived experience. It is the objectivity of scientific classification (in this case, the diagnosis) which confers authority on the label. Diagnosis is the fulcrum of the medical narrative. The judgement that this infers, as Frank has asserted above, may deny the self and social identity that the story of illness embodies.
Frank (1995) refers to illness as the experience of living through disease. It begins, he writes ‘when popular experience is overtaken by technical expertise, including complex organisations of treatment. Folk no longer go to bed and die, cared for by family members . . . [they] go to paid professionals who reinterpret their pains as symptoms, using a specialised language that is unfamiliar and overwhelming’ (1995: 5).
Hunter (1991) encapsulates this disconnection between the languages of disease and illness when she writes that the ‘transformed and medicalised narrative may be alien to the patient: strange depersonalised, unlived and unlivable. Returned to the patient in this alien form the medical narrative is all but unrecognizable as a version of the patient's story – and all but useless as an explanation of the patient's experience’ (1991: 13). This occurs when the medical model takes inadequate account of the illness problems, how the patient has actually lived, explained and accounted for her dysfunction, and is unable to incorporate this in its own narrative via the diagnostic label.
Medical and individual narratives can also align, and in so doing, provide positive outcomes. Lillrank (2003) reports the stories of women who suffered from chronic back pain. Finally receiving a diagnosis was a relief to these women; their illness was validated – not imagined – despite the fact that the name referred to a chronic, and potentially disabling condition.
An individual narrative of disease is not, however, independent of the regime associated with a diagnosis, proposes Klawiter (2004). A disease regime consists of the cultural, spatial and historical practices associated with a diagnosis and goes beyond the circumstances of the individual and the physiological nature of her illness. Klawiter demonstrates how the narrative of one individual altered over time as a result of different conditions in which she experienced the same diagnosis. The agendas, identities, social relations, policies and emotional vocabularies embodied in different ‘regimes of practice’ transformed public discourses and other forms of cultural production around breast cancer, and in turn transformed the personal narrative of this particular woman.
The diagnostic process is engaged upon with a positive end in mind, although, as above, positive does not necessarily imply a welcome pathology. As Engelhardt (1992) writes:
One invests labor in making a diagnosis not simply in order to know truly, but because one would hope to be able to avoid or mitigate some unpleasant state of affairs. In the case of prognosis, one wants at least to be able to plan for likely unpleasant future developments (1992: 73).
When the patient's account and the doctor's interpretation of symptoms enable the discovery of pathology, the treatment, or correction of the biological abnormality, ideally results in the restoration of good health, or at the least, enables a sense of where the road ahead may lead.
Winston Chong (2001) points out another positive outcome of diagnosis. Diagnosis may also confer collective identity on patients, removing them from the isolation of their suffering and providing them with new potential networks of support. In turn, this collective identity has political potential to shape, and in some cases challenge, professional authority, political imperatives, and social identity (Brown and Zavestoski 2004). The social health movement is driven in part by what these authors refer to as ‘embodied health movements’: groups constructed around particular diagnostic labels, illnesses, conditions, or by the perception of vulnerability to the same.
The collective identity may be virtual. A growing number of internet communities are diagnosis-focused. Web pages play a part in the social health movement: using the web to gather individuals around both existing and emerging diseases. Dumit (2006) explains that internet communities offer a means of survival for sufferers of medically unexplained symptoms. They provide an alternative support structure when the absence of diagnosis impugns the medical legitimacy of the individual's complaint. These communities ‘create their own separate and distinct medical culture, a culture that gives primary importance to the role of subjective experience’ (Goldstein 2004: 127). An example of a virtual community serving to create an alternative culture are pro-anorexia sites that seek to redefine anorexia nervosa outside medical discourse, instead casting it as a sanctuary, a ‘place where control and purity [can] be found’ (Fox et al. 2005: 958). Conversely, internet communities are also launched by health providers who have identified web pages as a site at which patients can be transformed from consumers into a ‘community of practice’ with potentially improved health outcomes (Winkelman and Choo 2003).
In any case, the question of identity which both diagnosis and its absence help to consolidate has an important role to play in understanding the social context of health, illness and disease. Klawiter's (1999) description of three distinct cultures which developed around breast cancer – and the varying needs of its sufferers – highlights different conceptions of the diagnosis which framed cultures of action. The discourses she described were as divergent as the ahistoric biological cancer for which medicine is salutatory for breast cancer as the product and source of profit of a predatory cancer industry.
Inadequate understanding of patient illness, disease frameworks or cultural context by either party prevents therapeutic alliance and shared ownership of the explanatory narrative. The ownership of the narrative is at the heart of tension between patients and doctors, Hunter (1991) maintains. Ownership, she argues, revolves around the language used, the assignment of authorship, and prioritisation of one version over another. In a medical re-telling, the illness becomes diagnosis, the person patient, and ‘professional values are transferred from the practitioner to the “case”’ (Kleinman 1988: 131).
In contrast, in some instances, medicine relinquishes willingly, and perhaps surprisingly, ownership of the diagnosis to the patient. For example, a sub-classification of migraine in the ICD is ‘intractable migraine, so-stated’ (italics mine). For this diagnosis to exist, the patient must speak (Bowker and Star 1999). Medicine's occasional willingness to shift ownership depending on the condition, write Bowker and Star, is not evidence, of oppression, rather of what kind of a tool the ICD is: ‘what work it does, and whose voice appears in its unfolding narrative’ (1999: 84).
Hadler (1996), in his discussion of fibromyalgia, describes diagnosis in confrontational terms: it is a battle in which a submissive patient agrees to participate only because of a tiny sliver of residual trust in the doctor-patient relationship resulting from generations of reverence. He underlines the vulnerability of the patient, the potentially flawed process of diagnosis, the inability of the profession to accept its limitations, and the imperfection of science. Hadler undoubtedly overstates many cases. But he does punctuate the degree to which contest or dispute is always potentially present in the diagnostic process, particularly, as he notes here, in the case of the disability determination (which unsurprisingly entails the allocation of resources) of someone with a disputed diagnosis.
Contest is accentuated by the latent dichotomy between illness and disease, the unequal power relationship between the patient and doctor, and the need for medical diagnosis for access to other services. Contest is present, notably in emerging illnesses such as Hadler's above example of fibromyalgia, and assumes a particularly acute form when the absence of diagnosis denies the patient access to the sick role, and, more importantly, to institutional recognition of suffering. Many have written of the distress of patients who do not receive a diagnosis for their complaint. This distress typically focuses on disorder, confusion, fear of being stigmatised by a psychogenic explanation and denial of services (Dumit 2006, Nettleton 2006, Malterud 2001, 2005).
Dumit (2006) describes how conflict is shaped both in- and outside of the patient doctor relationship. Clinicians are directed in their practice by the impositions of the health maintenance organisation, the employer and the insurer; bureaucracy determines who can provide care, and for what ailments. These organisations join in symbolic domination over the individual patient. But the key point, as Dumit makes clear in this paper and others, is ‘the intense interplay between diagnosis and legitimacy: without a diagnosis and other forms of acceptance into the medical system, sufferers are at risk of being denied social recognition of their very suffering and accused of simply faking it’ (2006: 578).
Contested diagnoses are typically those that cannot currently be explained by medicine or have explanations which are in dispute (Brown and Zavestoski 2004). The contest focuses on debate around whether they are primarily social, psychiatric or biological in nature (Dumit 2006). These are illnesses that are ‘are not defined in terms of organic pathology, but on the base of their symptoms’ (Nettleton et al. 2004). As I have discovered in my own work in progress, the literature dealing with medically unexplained symptoms predominantly assembles these enigmatic symptoms discursively as synonymous with somatising ailments and psychogenic in origin. The term ‘medically unexplained symptoms’ is used interchangeably with psychiatric diagnostic terms such as somatoform disorder, somatising, functional somatic syndrome, or other related terms implying an illness of psychogenic or sociogenic origin. Yet, the absence of the objective finding is prevalent in many debilitating disorders such as chronic fatigue syndrome, lower back pain, occupation overuse syndrome, and others. Nettleton (2006) also demonstrates that the difficulties of living with the uncertainty of non-diagnosis, and of defending the legitimacy of their complaints results in significant distress and dissatisfaction with the medical encounter and profession.
Conflict may also arise conversely, when diagnosis achieves non-clinical ends, and stymies the rights of the patient, who does not believe him or herself to be ill. A powerful example of this is political psychiatry, where dissent is treated as mental illness. Robin Munro (2002) quotes a Chinese textbook which develops the notion of ‘political mania’ as a form of paranoid psychosis:
Those afflicted do avid research into politics and put forward a whole set of original theories of their own, which they then try to peddle by every means possible . . . such people are sometimes viewed [by others] as being political dissidents (Sifa Jingshen Yixue Jianding Zixun Jieda, in Munro 2002).
A less sinister example of the state's utilisation of diagnosis is captured in the simple naming of foetal death; miscarriage, spontaneous abortion, and still-birth give access to different privileges and liabilities according to the label applied. An almost-arbitrary gestational limit determines whether a death certificate is issued, a burial permitted, a death benefit awarded, or charges pressed (Jutel 2006).
Another diagnosis which may go counter to the patient experience is the contemporary diagnosis of obesity. Many patients and advocacy groups refute that obesity is a disease and maintain that the medicalisation of obesity is evidence of size discrimination rather than of biophysical dysfunction (Gard and Wright 2005, Campos et al. 2006a, 2006b). Both individual and collective action in the case of other disputed diagnoses has resulted in reconsideration in some cases, and removal, in others, of the disease label.
The women's health movement has both advocated for, and succeeded to a certain extent in, the demedicalisation of some aspects of female biology, including menstruation and childbirth. Whilst childbirth is still generally medically managed in the West, there has been a move towards its demedicalisation. In New Zealand, for example, current policy enables midwives to be lead maternity carers and 78.1 per cent of New Zealand women registered with a midwife rather than a general practitioner or obstetrician to manage their pregnancy (New Zealand Health Information Service 2006).
Routine screening is another source of potentially disputed diagnoses. Screening seeks to find evidence of disease in a patient who is presenting for what may be unrelated, and possibly not even clinical, reasons. Whilst there has been a rise in screening as part of health assessment, there is significant debate about its putative benefits. Black (2000) has written that detecting subclinical conditions which would have otherwise gone to the grave with the patient (while not being the cause of death) can result in anxiety, unnecessary treatment, complications and even actual death. Screening for disease is practised with religious fervour, according to Howard Brody (2006), but not always with the acquiescence of the patient. This reflects what Armstrong (1995) casts as ‘surveillance’ medicine: a perception of human existence which sees everyone as normal, but no-one as truly healthy. Disease potential thus drives a focus on multiple and interrelated risk factors and continual monitoring.
The disease potential is a salient means of social control and is amplified by the ever-expanding technical access to new screening tools. The potential to detect genetic predispositions for disease, for example, may result in a range of actions including discriminatory hiring and insurance practices, selective abortion and stigmatisation of carriers (Wertz 1992, Raz and Vizner 2008). Screening programmes, such as the Dor Yeshorim premarital genetic testing programme for potential spouses in ultra-orthodox Jewish communities, results in the reinforcement of stigma of potential spouses who are presumed genetic carriers (Raz and Vizner 2008).
Engines of diagnosis
Whilst medicine holds the power to diagnose, many other agents hold the ability to promote particular diagnoses, if not to create them. Conrad (2005, 2007) has made reference to ‘engines of medicalisation’ which maintain or cultivate a medical locus for the management of banal life activities. These include biotechnologies, consumers and managed care. These engines bolster the flagging authority of medicine in the face of declining trust in the doctor. Conrad's concern is with medicalisation, and I have argued above that this focus is more general than on diagnosis alone. Whilst there is not the space to expand upon each of these drivers in the context of this essay, I will focus predominantly on the example of the pharmaceutical and related industries, whose interests are specifically served by the creation or maintenance of specific diagnoses.
In 1992, Payer introduced the term ‘disease monger’ and identified a medical-industrial complex which, she argued, had a great interest in promoting the notion that the greater population is either already sick or at risk of so becoming. Her focus was on the abuse of diagnosis as a mechanism for advancing political, social and commercial interests. She identified a range of agents who stood to benefit from the proliferation of diagnostic labels – creating a need for their products and services – including medical researchers, medical writers, health educators/promoters, the pharmaceutical and diagnostics industry, doctors, lawyers, hospitals, the courts, and insurance companies (Payer 1992).
There has since been wide-ranging critical discussion of the clinical and economic contexts of disease mongering (Moynihan and Cassels 2005, Payer 1992, Moynihan et al. 2002, Moncrieff et al. 2005, Tiefer 2006, Wolinsky 2005, Healy 2006, Dear and Webb 2007), with an array of definitions. Payer (1992) described mongering as ‘big business trying to convince essentially well people that they are sick, or slightly sick people that they are very ill’. Moynihan and colleagues (2002) refer to ‘widening the boundaries of treatable illness in order to expand markets for those who sell and deliver treatments’. However, to date, sociologists have paid scant attention to the pharmaceutical industry, in great part because of the discipline's focus on the experience of illness, the secretive nature of the industry, the inadequate scientific-technical knowledge of many sociologists, and the threat of legal challenge emanating from the pharmaceutical companies (Busfield 2006, Abraham 2007).1
From within a sociology of diagnosis, however, it is useful to explore, and indeed theorise, the phenomenon referred to as disease mongering by its critics, as diagnostic labels are at the fulcrum of its activities. To understand the way that diagnoses are promoted by non-medical sources requires reflection which includes, but goes beyond, the pharmaceutical industry, and notably includes other industries as well as the context in which diagnosis currently takes place.
The ability to promote diagnoses is facilitated by the diffusion of information through e-scaped medicine as described by Nettleton above. In this context, control over medical information shifts from doctor to a variety of other loci with manifold motivations (in the case of the industry, commercial). The patient becomes ‘consumer’, but not only in the commercial sense of the word. A proliferation of information and media sites are available to for ingestion: direct-to-consumer advertising; on-line self-screening tests; patient advocacy organisations; and disease awareness campaigns. Many of these are covertly, if not overtly propped up by the industry standing to gain from expanding the number of individuals under a particular diagnostic umbrella (Herxheimer 2003).
Leonore Tiefer (2006) argues that it was a convergence of pharmaceutical companies, urologists closely associated with this industry, and media-savvy sex therapists operating within the for-profit sector, which resulted in the creation and promotion of a diagnosis of ‘female sexual dysfunction’. The acute interest in women's sexuality, she maintains, is linked to uncritical definitions of what constitutes normal female sexuality. It is also part of the industry's desire to expand the market for drugs like Viagra by promoting erectile dysfunction more widely than justified (Lexchin 2006).
Commercial interests have an important stake in highlighting overweight as a medical diagnosis, rather than a statistical deviation from normative weight. These interests go beyond the pharmaceutical industry. Fitness centres – part of a $15 billion per annum industry in the US (US Census Bureau 2004) – in addition to the pharmaceutical and weight-loss industries, and even some practising physicians, rely heavily upon promoting public belief in overweight-as-disease. Identifying obesity as a disease against which gym-goers can battle, reminding them of the ever-present ‘threat’ of disease with body mass index charts, scales for self-monitoring and doomsday publications about the risks of corpulence, are important marketing tools: both of the diagnosis of obesity, and of vigilant exercise; the first justifying the second.
As Campos and colleagues (2006a) have pointed out, many of the leading researchers in obesity research, including those who set the criteria to determine what constitutes obesity, have an economic interest in defining overweight as widely as possible, either by their partnership with the pharmaceutical industry or by their own private weight-loss clinics. Their preoccupation with overweight as disease defies evidence of: lower mortality associated with overweight (BMI 25–29) than with normal weight (BMI 18.5–24.9) (Romero-Corral et al. 2006); health benefits of subcutaneous fat on hips and thighs (Nevill et al. 2006); and an increase in non-cancer mortality after weight loss (Nilsson et al. 2002).
Commercial influences are not the only non-medical forces to have an interest in promoting particular diagnoses. The diagnosis of ‘excited delirium’ has surfaced in coroners’ courts as explanation for deaths in custody following physical restraint, even though the criteria for such ‘deliria’ are far from established (Milliken 1998). Attributing these unexpected deaths to disease rather than to excessive force concords comfortably with the presumed ethical behaviour of the police and the role one would hope to see them play in the community.
Ivan Illich (1976) wrote that ‘disease always intensifies stress, defines incapacity, imposes inactivity, and focuses apprehension on non-recovery, on uncertainty, and on one's dependence upon future medical findings’. He continues:
Once a society organizes for a preventative disease-hunt, it gives epidemic proportions to diagnosis. This ultimate triumph of therapeutic culture turns the independence of the average healthy person into an intolerable form of deviance (1976: 104).
Good (1969) writes in a similar tone, pointing out that ‘by devising a linguistic category with specific connotations, one is designing the armaments for a battle; by having it accepted and used, one has scored a major victory’ (1969: 89). Bowker and Starr (1999) explain the power of the diagnosis through its classificatory functions: the diagnosis, as classification, does the work of ‘making it appear that science describes nature (and nature alone) and that politics is about social power (and social power alone)’ (1999: 46). In any case, however, the work of the diagnosis is often invisible, ‘erased by [its] naturalization into the routines of life’ concealing conflict and multiplicity beneath layers of obscure representation (1999: 47).