Chapter 13. Experiencing ill-health
Susan Philpin
Introduction
This chapter will explore how sociology may contribute to our understanding of the ways in which people experience ill-health. Its focus is on the patient’s perspective of this experience, that is, the ways in which patients make sense of their illness – what the illness means to them. Hence, the research studies underpinning this chapter are predominantly from the interpretive paradigm, including such methodologies as symbolic interactionism; phenomenology; ethnography and narrative analysis.
Useful sociological insights into people’s experience of illness may be gained from a wide variety of sources, including a number of ‘classic’ sociological studies and more recent research accounts including nursing studies which have used a sociological framework. Further understanding of the meaning of illness experiences may also be gained from more ‘general’ literature, where people write their own accounts of their illness experiences; some examples of these accounts are listed at the end of this chapter. However, it must be borne in mind that these autobiographical accounts, illuminating though they are, serve different purposes than specific research studies (Bury 2001).
Talcott Parsons and the sick role
Although the meaning of illness from the sufferers’ perspective is best explored from an interpretive perspective, the first classic study to be considered in this section is, in fact, not based on this approach and arguably is more concerned with society’s (rather than the patient’s) understanding of what it means to be ill. However, as will be shown, the patient’s experience of illness is very much influenced by society’s perception of just what counts as illness and how that illness is to be dealt with.
Talcott Parsons was one of the earliest writers to consider the social dimensions of illness and to some extent, his writing reflects a particular culture and era – North America in the 1950s. His work is grounded in a theoretical perspective known as functionalism, which argues that social actions are explained in terms of their functions towards the continuity of a society (see Chapter 2). His concept of the sick role to explain the illness experience is premised on the following key points:
▪ To be ill (or ‘sick’ in North American parlance) is to deviate from normal social behaviour inasmuch as the sick person is unable to fulfil her/his normal social roles, which interferes with important social functions. The concept of deviance is examined in Chapter 13
▪ Such deviance needs to be contained and controlled in order to maintain a functioning society
▪ Doctors play a key role in controlling deviance by defining and legitimating sickness.
As befits the functionalist perspective, the patient role ‘functions’ in accordance with the doctor’s role; there is a symbiotic link between the two roles. Hence, the elements of the sick role are best understood in terms of the relationship between the specific rights and obligations inherent in both the doctor and patient roles.
Parsons (1951) describes four elements of the sick role for the patient – two ‘rights’ and two ‘obligations’. The rights are that first, the patient will be exempted from normal social role responsibilities and second, the patient will also be exempted from responsibility for her/his condition. The obligations are that first, the patient must want to get well and, second will seek competent help and cooperate with that help. Parsons notes the ways in which the patient role and the doctor role complement each other in that the doctor is required to legitimate the patient’s entry into the sick role and also that the patient is required to cooperate with the doctor. Thus in this way, the sick role functions to control the threat that illness poses to the individual and to the social order. This is set out diagrammatically in the Box 13.1.
Box 13-1
The roles of the patient and doctor
Patient role
Rights
▪ Exempted from normal social role responsibilities where this is authorized by the appropriate agents
▪ Not seen as responsible for illness and not able to get better by an act of will
Obligations
▪ Must see illness as undesirable and want to get better
▪ Must seek technically competent help (usually from a physician) and comply with treatment
Doctor role
Rights
▪ Granted privileged access to physically and emotionally examine patients
▪ Granted autonomy in professional practice
▪ Granted authority over the patient
Obligations
▪ To apply technical competence to patient’s illness
▪ To be altruistically orientated towards the patient’s welfare rather than own self-interest
▪ To maintain affective neutrality, i.e. should avoid judging patient’s behaviour in terms of personal value system or becoming emotionally involved with patients.
This typology makes it clear that the ‘sick role’ is not just about the sick person’s conception of their role, rather, it consists of a set of expectations about what it takes to be counted as really sick and what can and cannot be expected of sick people. In her diaries, Virginia Woolf recounts the particular pleasures of being absolved from social responsibilities when ill. She comments that while in health, people are required to keep up a ‘genial pretence’ to communicate with others and fulfil their various responsibilities, but notes that:
‘In illness this make-believe ceases. Directly the bed is called for, or, sunk deep among pillows in one chair … we cease to be soldiers in the army of the upright; we become deserters. They march to battle’. (Woolf [1926] 1994: 321)
CRITIQUES OF PARSONS’ SICK ROLE
In spite of its influence and utility in explaining illness behaviour, Parsons’ sick role has, not surprisingly, provoked considerable criticism and debate. Some of this criticism stems from criticism of the functionalist perspective upon which the theory is based inasmuch as this perspective treats social relationships, including doctor–patient relationships, as being essentially consensual, that is to argue that this approach tends to discount conflict (see Chapter 8).
Moreover, there would appear to be a plethora of conditions to which the sick role does not apply. These include minor illness conditions where recourse to the sick role is not necessary and also pregnancy, which, although sometimes grants exemption from normal roles is not usually viewed as an abnormal condition. The issue of not being responsible for one’s condition is also problematic in relation to so called ‘self-inflicted’ conditions, such as alcoholism, sexually transmitted diseases and smoking-related diseases, where people could be deemed to be responsible for their illness.
However, it is in relation to chronic illnesses (which we will explore in the next section) that the application of the sick role is particularly problematic, for a number of reasons. First, in many cases, people are unable to absolve themselves from their usual responsibilities and tasks in the long term; second, people with chronic illness may never return to complete functional levels despite seeking competent help and cooperating with treatment. In response to this last point, Parsons (1975) pointed out that although complete recovery from some conditions may not be possible, these conditions may be ‘managed’ to enable the patient to lead a relatively normal life (e.g. diabetes).
In spite of these criticisms, the concept of the sick role made an important contribution to understanding health and illness, in that it moved on from focusing on physical and mental symptoms to include exploration of the social processes involved in becoming ill; that is that other people play a part in defining and legitimating illness. The concept is best suited to acute illnesses where the patient is the passive recipient of medical skills. For example, in one of the few sociological studies of the experience of acute, critical illness, a medical sociologist, Rier (2000) documents and analyses his own experiences of being a patient in an Israeli intensive care unit where he was admitted in acute respiratory and renal failure following viral pneumonia. Rier makes the point that in the acute stage of his illness, he was content to take the passive patient role and had no desire to have medical information shared with him or to be involved in decision making. Indeed, he argues that in the critical phase of illness it makes therapeutic sense for the doctor to take the paternalistic (Parsonian) role, concealing frightening information from patients (although not from their families) in order to instil confidence.
In addition, Parsons’ concept of the sick role contributes to our understanding of the ways in which certain categories of patients (and illnesses) may be regarded as socially unacceptable and treated differently by healthcare workers. For example, people who self-harm in various ways – be it through smoking, drinking, abusing substances or cutting themselves – may be seen as responsible for their own conditions and therefore less deserving of care. That is to argue that their legitimate access to the sick role is denied.
The experience of chronic illness
Much, though not all (see for instance Frank 2002, Richman 2000 and Rier 2000) of the sociological studies concerning the experience of illness focus on the experience of chronic illness, reflecting the nature of illness and indeed much nursing work, at the start of the twenty-first century. Chronic illness can only be controlled rather than cured and thus, as its name suggests, refers to a long-term condition. However, the boundary between acute and chronic illness is not necessarily clear-cut. For instance in the case of spinal cord injury, the initial trauma would be an acute problem but the consequences of the injury are also long-term disability. Given that any system of the body may be affected by this type of illness, the term encompasses a wide range of physical and mental conditions which many areas of nursing work, in both hospital and community, will deal with on a regular basis. Chronic obstructive pulmonary disease, diabetes, congestive cardiac failure, stroke, asthma, rheumatoid arthritis, leg ulcers, schizophrenia are all examples of chronic illness.
In addition, many forms of cancer have, in recent years, become perceived as chronic conditions since the treatment may control the spread of the disease in the long term without necessarily curing it. Thus, people may be symptom free, so not ‘ill’, yet not cured of this disease. Sufferers of other chronic illnesses may also have periods of relative ‘wellness’ when their symptoms are in remission, while by no means being cured; thus, there is a blurring of boundaries between illness and health. Frank (1995) describes people who are well but not cured as the ‘remission society’ which include people who have had:
‘… almost any cancer, those living in cardiac recovery, diabetics, those whose allergies and environmental sensitivities require dietary and other self-monitoring. Those with prostheses and mechanical body regulators, the chronically ill …’. (Frank 1995: 8)
Similarly, Verbrugge and Jette (1994) note that most people with chronic illness ‘live with rather than die from’ their condition. Many chronic illnesses are of course also associated with varying degrees of disability, which will be considered in depth in Chapter 14.
Chronic illness has become increasingly prevalent in the last few decades, partly as a result of the ageing population (the incidence increases with age) and partly as a result of the effective prevention and treatment of infectious diseases. Chronic illness is usually measured by the amount of ‘limiting long-standing illness’ in a particular area. In Great Britain, the Department of Health reports that ‘17.5 million people may be living with a chronic disease’ and that ‘it is likely that three-quarters of those over 75 years are suffering form chronic disease, and this figure continues to rise’ (Department of Health 2004). More than half of pensioners living alone have a limiting long-term illness (52.8%). In pensioner–family households, 60.4% contains someone with a limiting long-term illness (Census 2001).
Within the literature pertaining to the experience of chronic illness, there are a number of classic and more recent sociological studies, patients’ narrative accounts (some of which are first-person accounts) and also a burgeoning nursing literature, which draws on sociological methods to explore the experience of chronic illness. This range of studies indicates that while different chronic illnesses present with different physical and mental symptoms for sufferers and carers to manage, there are also certain commonalities to chronic illnesses, an understanding of which helps healthcare workers plan and implement holistic care which will address patients’ complex needs. Of particular relevance for health workers is the fact that the research reveals that patients often feel distanced socially and emotionally from their professional carers at a time when they are most vulnerable (see Chapter 8). In the absence of a cure for their conditions and the possibly limited efficacy of medical interventions, social support plays a vital role in coping with chronic illness and nurses are in a position to improve their patients’ experiences by listening to them, providing emotional support and helping them to adapt to their changing symptoms (Frank 2002).
POTENTIAL PROBLEMS ASSOCIATED WITH LIVING WITH CHRONIC ILLNESS
A framework that is still useful in considering the impact of chronic illness on the daily lives of patients and their families is one that was developed by the North American sociologists Strauss and Glaser in the 1970s. Strauss et al (1984) outline eight key potential problems – listed in Box 13.2– that people with chronic illness may have to deal with. Although developed over thirty years ago, many studies of chronic illness draw on this framework and the rest of this section will also utilize its main points, developing them further where appropriate. To avoid repetition, the final point in their framework – ‘confronting attendant psychological, marital, and familial problems’ – will be included where appropriate within the other problems rather than addressed as a separate issue.
Box 13-2
Impacts of chronic illness
1 The prevention of medical crises and their management once they occur
2 The control of symptoms
3 The carrying out of prescribed regimens and the management of problems attendant on carrying out the regimens
4 The prevention of, or living with, social isolation caused by lessened contact with others
5 The adjustment to changes in the course of disease, whether it moves downwards or has remissions
6 The attempts at normalizing both interaction with others and style of life
7 Funding – finding the necessary money – to pay for treatments or to survive despite partial or complete loss of employment
8 Confronting attendant psychological, marital and familial problems
(Strauss et al 1984: 16)
Medical crises, symptoms and regimens
Strauss et al (1984) argue that these problems intrude into people’s everyday lives and require great effort and hard work from patients and their families to learn how to deal with them. Although the first three of these problems may appear to be more medical than social, as Strauss et al point out, dealing with them often involves social strategies in terms of altering lifestyles and enlisting the help of others.
For instance, people (and/or their families) with type II diabetes need to learn to recognize the signs of either hypoglycaemia or hyperglycaemia and ensure that glucose or insulin is always available to manage either of these medical crises. The special diet prescribed may require adjustments to family meals and to social arrangements such as going out for meals or drinks with friends. In addition, with diabetes, the patient (or family) must learn how to inject insulin and monitor glucose levels in blood and urine and recognize and deal with side-effects of injecting. People who need to inject outside the home need to find safe and private places to do this and also to find safe and acceptable ways of disposing of needles possibly in the workplace or in school in the case of children.
In many cases, the drug therapy necessary to relieve chronic illness symptoms produces unwanted side effects and patients have to attempt to strike a balance between symptom control and unwanted side-effects. This is illustrated by Pinder’s (1988) study, based on symbolic interactionism, of people with Parkinson’s disease. This study also indicated the intrusiveness of medication regimes for some people with this condition, requiring timetabling and scheduling other activities around pill-taking.
