Strauss et al (1984) characterised chronic illness as an experience of multiple problems that may change but do not go away. Chronic illness is marked by periodic medical crises. Preventing and controlling these crises requires the person with the illness to engage in planning as well as developing complex social arrangements to manage the upheaval involved. When Joanne in our case study first developed Type 1 diabetes mellitus, she experienced symptoms caused by hyperglycaemia, such as polydipsia (thirst), polyphagia (hunger) and polyuria (increased urination). Through these symptoms Joanne experienced a type of medical crisis that had a tremendous impact on her life.

Chronic illness creates a demand to manage treatment regimens. Amajor endeavour for chronically ill persons is to manage the symptoms of their illness. Adhering to the treatment plan was identified by Strauss et al (1984) as a major means of attaining this. Sometimes, however, this is not enough. In addition to their medical regimens, ill people will often seek to supplement their regimens with alternative treatments if they discover that their symptoms are persisting.

In order to manage, people with chronic illness reorder time to juggle the management of both their illness and their lives. This is part of trying to maintain a ‘normal life’. A key strategy in living with chronic illness, according to Strauss et al (1984), is normalisation. People hide and conceal their disease from others, trying to pass themselves as ‘normal’, an idealised notion of being the same as the rest of the presumably ‘normal’ population. For instance, Joanne attempted to hide and conceal her Type 1 diabetes mellitus from her colleagues, wanting to appear the same as her peers.

The second major area of psychosocial investigation has been the idea of ‘illness trajectory’ as a way of understanding the complex path of chronic illness (Glaser & Strauss 1967). A trajectory is a pathway, and the notion of progress along that pathway is implicit in the term. Trajectories have been explored from the perspective of those involved (the ill and their carers) and assist in predicting the rate of symptom progression, the types of crises that may occur, and the patterns and variability in specific disease development. The complexity of some illnesses, together with an increase in technological treatments, means that there are very many more possible trajectories (Lubkin 1998).

Mapping trajectories has been of interest to many with Rolland (1987) developing the early work about adaptation in chronic illness. He described four basic classifications that are very helpful in identifying key features of the psychosocial aspects of chronic disease: ‘onset’, the rate at which the disease occurs; ‘course’ of the disease categorised as either progressive, constant or relapsing/episodic; ‘outcome’ of the disease on life span; and the ‘degree of incapacitation’. The onset of Joanne’s diabetes was gradual, with symptoms slowly becoming more noticeable. The course of her disease has been episodic. After diagnosis, she had some months of stabilisation, but thereafter her blood sugar levels became quite erratic, causing significant concern. The degree of incapacitation experienced by Joanne has been significant enough to create stress for her, as she has attempted to juggle her work and personal lives with her new dietary, exercise and medication regime. However, she has managed to keep working and pursue an active recreational life, so in one sense the incapacity she has experienced thus far has been slight.

Along with these classifications, it is also helpful to think about the time phases within chronic illness trajectories. Rolland (1987) identified three such time phases. First, there is the ‘crisis’ phase, which is the period before and immediately surrounding diagnosis, where learning to live with symptoms and illness-related demands takes place. This was a difficult time for Joanne, who found that her diabetes had consequences for her work and private life. She experienced a lot of anxiety as she tried to accommodate her life around her newly diagnosed disease, and she worried about the long-term consequences. Second is the ‘chronic’ phase, the time span between initial diagnosis and the final time phase where the key task is to continue as normal a life as possible in the face of the abnormality of having a chronic illness where the outcomes are uncertain (Rolland 1987). Joanne wondered whether she would ever be able to have children, and was worried that her police work would suffer. Nevertheless, she made relevant lifestyle changes and monitored her blood sugar levels in an effort to manage her diabetes. Third, the ‘terminal’ phase is marked by issues surrounding grief and death. Not everyone with chronic illness will move into this phase, because some chronic illnesses, such as arthritis, are not life-threatening, whilst other diseases such as diabetes, if carefully managed, will not necessarily lead to death.

Moving away from a classificatory approach, Strauss and others (Corbin & Strauss 1991; Strauss et al 1984) argued that trajectories of illness are also strongly linked to the ill person’s perceptions of events, as well as the physiological manifestations of their disease. Many diseases have fairly predictable trajectories, whilst other diseases are relatively uncertain. Whatever the trajectory, an ill person seeks to locate themselves within it. They are aware of the phases and changes in manifestations of their disease and are vigilant of symptom change as a means of tracking the course of their illness.

There are a growing number of publications from people with chronic illnesses who offer an alternative view of trajectories—discussing the journey of living with a chronic illness. Register (1987), for example, has a longstanding chronic illness, and described the journey from diagnosis through to finding new ways of living. This journey requires learning the politics of being an ill individual in a world of health-centred people. Initially, diagnosis of illness may be a time of elation, because finally the ill person feels that their concerns about the symptoms they have been experiencing have been legitimised. Diagnosis provides a tangible position from which the ill person can relate to the problems they are experiencing. It is noticeable, for example, that Joanne experienced feelings of ‘relief’ when she was initially diagnosed and had an explanation for why she had felt unwell.

From the elation of having a name for their problem, many people move through a process of grieving for the loss of their health and lifestyle. They frequently experience a preoccupation with self, focusing on the impact of the illness on all aspects of their life. As we’ve already noted, Joanne did just that. She considered many of her life ambitions in a new light, and wondered how having diabetes would affect her plans for the future as well as her present life.

After the initial diagnostic phase, chronically ill people experience stigma, which is frequently reinforced through association with others who are chronically ill. Being labelled by the disease they experience and the treatments they use, people with chronic illness are set apart from others. The ‘etiquette’ of chronic illness demands that chronically ill persons try to pass themselves as healthy or at least conform to societal expectations of the sick role. Social interaction with others constantly demands explanation of why the ill person is not the same as everyone else, why they look different, why they eat differently, why they walk or talk differently. The demand for explanation is a constant reminder of not being ‘normal’ (Register 1987). Ill people try to create as near a ‘normal’ appearance as possible to reduce the degree of stigma experienced.

Quality of life is seen as an important aspect of chronic illnesses. What quality of life actually means, however, is not clearly defined (Fries & Spitz 1990, Garratt et al 2002). Frequently, quality of life has been equated with the quality of the outcomes of various available treatments, and often physical, mental and social indicators as well as symptoms are assessed (Sanders et al 1998). Morbidity and mortality have been used to describe the quality of life outcomes but, as Burckhardt et al (1989) argued, the subjective perceptions of people with chronic illness need to be included if therapeutic nursing interventions are to enhance quality of life. In other words, it is not appropriate to measure quality of life, nor consider how nursing care can improve a person’s quality of life, without actually asking that person to identify what is important for them in relation to their quality of life.

Interestingly, Molzahn and colleagues (1997) found that nurses rated quality of life lower than patients. This demonstrates a poor fit between consumer and health professional perceptions of needs in chronic illness management (Rasmussen, Wellard & Nankurvis 2001, Wellard & Rushton 2002, Wellard & Street 1999). It suggests that nurses may be focused on the problems associated with living with a chronic illness, but not with the resilience that people with chronic illness demonstrate in relation to managing their health problems. This is a topic that will be explored in more depth in Chapter 11, Journeys Through Illness: Suffering and Resilience.

Compliance with treatment has been the fourth major area of psychosocial inquiry relating to chronic illness. Health professionals view the successful management of chronic illness as reliant on patients’ adherence to treatment regimens. Treatment regimens require patients to change the way in which they manage aspects of their life and can range from very simple to extremely complex routines.

The term ‘compliance’ infers patient submission to the medical (health professional) advice in relation to taking medication, following diets, or executing lifestyle changes (Vermeire et al 2001). Kyngäs (2000) refers to compliance as an active, intentional and responsible process of health care. It is estimated that compliance rates in chronic illness vary from 80% (Kyngäs et al 2000) to 50% (Cameron & Gregor 1987, Turk & Rudy 1991), depending on how compliance is defined and measured (Hailey & Moss 2000).

Non-compliance has been noted as having severe consequences, including exacerbation and progression of disability (Turk & Rudy 1991). A failure to follow treatment regimens can result in patients needing emergency treatments, and hospitalisation to re-establish a stable condition (Lamping & Campbell 1990). Consequently, medical non-compliance creates an additional economic burden on the health care system (Vermeire et al 2001). It has been argued that predicting the degree of compliance would allow clinicians to explore alternative strategies that would lead to increased patient compliance. Therefore, the surveillance of compliance has become an important feature of clinical practice.