Development Of Study About Chronic Illness

The term ‘Chronic Illness’ can be defined as a long-term affliction which cannot be cured or vaccinated. It can be argued that Chronic disease is one of the most prevalent health care problems worldwide, (Lubkin 2006) argues that approximately 133 million individuals were living with a chronic condition in 2004. Respectively, (Busse 2010) states that Chronic illnesses are the leading cause of mortality and morbidity in Europe. Both effectively portray the extent of destruction that this phenomenon brings about. There are many types of chronic illness, whilst some may develop gradually, others have a more sudden onset. Furthermore, the severity of these illnesses may vary. Due to their differing nature, they also impact the afflicted individual in different ways; these will be discussed. Many have sought to analyse the impact of chronic illness on the human life experience. Michael Bury (1982) put forward the idea of the Disrupted Biography, Kathy Charmaz (1983) argued her theory on the Loss of Self, and Gareth Williams (1984) focussed his findings on the concept of Narrative Reconstruction. Through an analysis of the sociological impact of chronic illness on life experience, it will be shown how this concept impacts overall quality of life. Furthermore, using the main ideologies of Bury (1982), Charmaz (1983), Gareth (1984) and more, it will be shown how the phenomenon of chronic illness is depicted by the theorists in order to understand the extent of the epidemic.

Michael Bury (1982, 1991) mainly focussed on chronic illness as a disturbance to the fluidity of one’s life. He developed his theory of the Disruption of the Biography, outlining the changes and adaptations an individual makes once diagnosed with a chronic illness. He argues that every individual has a ‘biography’, which is essentially their life story. This story can be written by individuals throughout their life, through their actions and bodies. He highlights that individual’s thoughts, beliefs and actions (what makes them unique) is shaped through their past, present and future experiences. An individual’s biography can also derive of important events, milestones and special occasions. With regards to the future, Bury argues that individuals act in accordance to the goals or ambitions they have, however, issues with fulfilling these life goals or ambitions arise when chronic illness disturbs the fluidity of one’s life, requiring them to start ‘rewriting’ their biography (Bury 1982). The main idea behind Bury’s theory is chronic illness disrupts the narrative of an individual’s life by requiring them to reconstruct their previous norms, values and overall identity. Once living with a chronic illness, an individual is more susceptible to facing many challenges and tribulations which indefinitely alters their life purpose, both on a personal and interpersonal level. The requirement for additional support, can result in the individual feeling a sense of deterioration, this can have a negative impact on their mental health. Additionally, friends or family may act with caution or overt affection toward the sufferer, adding to their perception of incompetence.

Michael Bury (1982) also states that the experience of chronic illness is one which can produce feelings of mortality and suffering, which may not have been prevalent beforehand. Within his theory, Bury also outlines that the type of illness has a substantial influence on how an individual’s life is impacted. Illnesses that have a slow development are usually easier to come to terms with because of their gradual nature; which allows the individual to make physical and mental adjustments to their new way of living over a period of time. An example of this is Diabetes. Those who are at a risk of developing diabetes are typically encouraged by their GP to engage in preventative measures such as plant-based, or healthy eating as well as regular exercise (Trapp 2012). While these measures are designed for the individual to deter the illness. If they do develop it, they are aware of the risks and changes as well as how to inhibit it from getting worse. Similarly, Multiple Sclerosis, a chronic autoimmune disorder, which develops over time can cause issues with balance, vision, motor control and other general bodily functions. It has unpredictable characteristics, but again, due to its slow unfolding, it allows the individual (and their family) time to adapt (Ghafari 2013). Whereas illnesses that have a sudden onset such as a Stroke can be more difficult to deal with due to their unprecedented nature. Many suffering from the consequences of a Stroke may have to adopt a number of coping behaviours, such as engaging in physical therapy, changing their everyday behaviours, as well as altering their home to create a more suitable environment for themselves. This concept that be validated by (Lou et al. 2016) who show that Stroke cause a “profound disruption of life as known,” arguing that the patients must undergo a process of restructuring their life post-stroke. However, this process is not comfortable, rather one which is very unpredictable and unstable. It was also found that the patients and their carers value information which helps them to prepare and adapt to their new situation. These findings show that, whilst both types of illnesses (sudden or gradual) cause a disruption to one’s life, the severity of that disruption is dependent on the nature of the chronic illness. Overall, Bury’s ideas can be highly useful in explaining how the onset of chronic illness can disrupt life meaning, relationships, and identity. He also draws attention to the importance of a supportive social network and the ability to physically mobilise (Lawton 2003) which can be pertinent factors in shaping how the illness is experienced by the sufferer.

Notable Professor and Sociologist Kathy Charmaz (1983) was one of the first to write about chronic illness. Although her work is published in a similar era of time, she takes a more contrasting approach to that of Bury’s, focussing particularly on the severe and detrimental impacts that chronic illness has on an individual, concentrating most of her work on more extreme cases (Lawton 2003). It can also be argued that Charmaz takes a more cynical approach to explaining the effects of chronic illness. She developed her theory of the ‘Loss of Self’, outlining the fluctuation of one’s identity after diagnosed with such an illness. Through this concept, Charmaz aims to identify the experiences patients are faced with. Particularly with regards to the deterioration of a previous healthier identity, being replaced with an unexpected ‘new’ identity. She seeked to understand suffering, coping behaviours and psychological changes in patients after being diagnosed with a long-term illness and discovered that chronic illness was an extremely unsettling event. She argued that the deterioration of a former sense of identity was rife among many individuals, and as a result of their illness, they suffered from leading restricted lives, experiencing social isolation, being discredited and inconveniencing others (Charmaz 1983). She analysed how these sources of suffering impacted the consciousness of the sufferer. Although it may be argued that Charmaz focusses very heavily on chronic illness as a devastating event, she was also one of the first to understand the depth of pain felt by suffers of illness, not just as a physical sensation, but a mental and emotional perception. With regards to suffering, she argued that physical pain was not the only tribulation, rather social suffering and identity suffering were also evident. One main example of social suffering is illness impacting relationships with family or friends. Members of the family may feel a sense of increased role strain in caring for their ill relative. There may also be strain within the family dynamic. This concept can be validated by (Eriksson et al. 2019) who carried out qualitative, interview-based research on a sample of 16 Swedish couples, who each had a chronically ill spouse. After conducting their research, they discovered that partners experienced various challenges when caring for their spouse. Due to the demanding nature of a chronic illness, it resulted in them having little time for themselves. This could increase their susceptibility to compromised psychological health, as well as lowered physical health. This is also congruent with Bury’s ideas on the family’s role in supporting a relative with chronic illness. Furthermore, the partners stressed the lack of assistance provided by the health care sector, stating most social support was offered by informal relations.

Charmaz also made the argument that deterioration of identity could occur in a series of events. Rather than the individual losing all idea of who they are rapidly, it would occur gradually, over time (Charmaz 1983). For example, the onset of chronic illness may result in lowered physical ability, which may lower self-esteem. This can lead to withdrawal from social events, or isolation from friends or family. There may also be a stigma of illness within their particular society (or they may stigmatise themselves) which can also contribute to lowered self-esteem (Millen and Walker 2014). And so, this kickstarts the slow decline of a sense of self. Overall, Charmaz has attempted to provide a more comprehensive understanding of how chronic illness impacts the sufferer. Through drawing attention to many issues faced – other than exclusively physical pain – such as social factors, relationships, and the deterioration of a previous ‘healthy’ identity, Charmaz has been effective in illustrating the complexity of chronic illness. The theories put forward by Michael Bury (1982) and Kathy Charmaz (1983) are both significant in their own right. however, they are most effective when considered in combination. Using ideas from Bury’s theory of Disrupted Biography and Charmaz’s ideas of Loss of Self, it can be shown how sufferers of chronic illness face various personal, social, environmental, psychological and physical challenges. The two theories together also provide a more inclusive and wide-ranging understanding of the experience of chronic illness. If these concepts are utilised by healthcare professionals, they may greatly aid in the advancement of patient care.

Although the initial period following diagnosis can be filled with depression, anxiety and feelings of unpreparedness (Schofield et al. 2003). Over time, these negative feelings can subside, meaning individuals are better adapted to their situation and seek to pursue a new lifestyle, one which is more suited to their needs and abilities. Gareth Williams (1984) seeked to take a more positive and redemptive approach when analysing chronic illness sufferers. He focussed mainly on the relationship between the sufferer’s mind and body (the process of syncing their mental ideology to their physical condition) and their adaptation to a ‘new’ identity. This can be illustrated through his theory of Narrative Reconstruction (Williams 1984). Through this concept, Williams analyses how those living with a long-term illness move through stages of acknowledgement, before coming to terms with the illness, and thus, adapting a new lifestyle to suit their current physical and mental condition. Contrastingly to the theories of Bury and Charmaz – which outline the individual’s reaction and coping methods in the initial periods of the illness, when the experience is still fresh and raw.