Exploring the Relationship Between Illness and Identity

In this essay I will be exploring the relationship between illness and identity, drawing on specific examples documented in the article ‘Disrupted lives and threats to identity: The experience of people with colorectal cancer within the first year following diagnosis’, by Gill Hubbard, Lisa Kidd and Nora Kearney. Using this article as my focus point, I will be exploring the relationship between colorectal cancer on patient’s identities within the first year after their diagnosis.

A concept which appears central to the theme of illness and identity in this article is a term coined by Bury as ‘biographical disruption’. ‘Biographical disruption’ refers to chronic illness as a major disruptive event in one’s life and examines how people respond and adjust to this event. The disruption of chronic illness on people’s lives does not only focus on the effects on the physical body, but also examines the impact it has on other aspects of the individual’s life, such as their social life and sense of identity.

In my article of focus, several respondents living with colorectal cancer experience their illness as a form of biographical disruption as the disruptions to their lives caused by this chronic illness poses a threat to their identity and sense of self. A male respondent, who is referred to in the article as P28, recalls his thoughts at the time he was asked to put his contact lenses in after the onset of his diagnosis, as he says, ‘I was at this big mirror right in front of me and it was like looking at a stranger’. He also says, ‘‘In some respects I’m stronger; in other respects, I’m weaker. I think I’m mentally stronger and physically weaker’. P28 is experiencing, what Charmaz calls a ‘loss of self’, in the sense that he appears distanced from the self-images of the past and seems concerned about the person he is becoming as a result of his illness. It can be said that P28 has undergone emotional and physical changes that have resulted in the disruption of his sense of self and identity. Although he is still technically the same person as he was pre-illness, he does not perceive himself as the same person now.

A way in which P28 tried to maintain his pre-illness identity was by remaining in employment, continuing the job he did before the onset of his chronic illness. Corbin and Strauss refer to this as ‘biographical work’, a concept which is grounded on the idea that people must do certain things in order to face the new circumstances brought on by their chronic illness. In this instance, biographical work for P28 was remaining in employment and this was a way in which he tried to maintain his pre-illness identity. As Bury affirms, the meaning of life becomes threatened by the onset of chronic illness; in this sense, P28 attempts to combat this threat by holding onto his job role – an aspect of his pre-illness identity that he tries to maintain throughout his illness in order to achieve a sense of normalisation.

Furthermore, Bury suggests that taken-for-granted assumptions are further evidence of biographical destruction as it forces the chronically ill individual to think about what their pre-illness selves could achieve compared to their post-illness self. This concept is relevant to the case of P28 as he acknowledged that once back to work, he could not complete his duties the same way in which he could before the onset of his cancer; he found that he was frequently tired and unable to concentrate for long periods of time. Although P28 tried to minimise the biographical disruption experienced, the effects of cancer were too great to completely escape. According to Bury, people living with a chronic illness attempt to normalise their lives by maintaining their pre-illness lifestyle and daily activities, and P28 did this by returning to employment.

It is important to note that although many respondents in this article experienced colorectal cancer and biographical disruption as a threat to their identity, several other respondents did not. Although cancer still disrupts the everyday lives of these patients, there was nothing to suggest that these disruptions led them to question their identity or maintain their pre-illness identity through biographical work.

It is evident in the article that cancer caused physical and emotional disruptions to the respondent’s lives, however these disruptions were not always perceived as a threat to the respondent’s identity. Hubbard, Kidd and Kearney refers to these disruptions as a ‘physical and emotional assault which disrupts their daily lives without being an assault on their identity’. A female respondent, P13, exclaims that ‘some days I’m very sore but I think it’s just the diarrhoea you know…it just wears me out some day’; this is an example of cancer being an assault to the physical self without threatening the sense of self. It is evident that the symptoms of cancer are causing a major disruptive experience for P13, however, it does not imply that this is making her think about the taken for granted assumptions about her body and social world during her pre-illness life.

In the following paragraphs, I will be investigating the relationship between illness and identity for people living with HIV (Human Immunodeficiency Virus). A concept which appears essential in understanding identity of HIV positive people is what Carricaburu and Pierret have called ‘biographical reinforcement’, which argues that aspects of identity are reinforced after being diagnosed with an illness.

Drawing on examples from the article ‘“When you have children, you’re obliged to live”: motherhood, chronic illness and biological disruption’ by Sarah Nettleton, many of the women infected with HIV emphasised the fact that they wanted to change their lives for their children’s sake and demonstrated the importance of establishing an identity as a good mother. One respondent reveals that she found it difficult to stay away from drugs, she says ‘It took me a long time to get the respect from my family back […] to be able to walk past dealers… […] but I had to do it for my daughter’. This highlights the idea that she wished to transform her life for her daughter and her identity as a mother was reinforced post-diagnosis. The respondent relates her motivation to resist using drugs to her desire to establish her post-illness identity as a good mother.

Moreover, in the article by Carricaburu and Pierret ‘from biographical disruption to biological reinforcement: the case of HIV-positive men’, haemophilic men living with HIV reinforced their identity as a haemophilic person as one 46-year-old respondent admits 'I always pretended I was leading a normal life with haemophilia. It suited me to see things that way. Now, I realise I missed out on true life [. . .] If I hadn't been infected, I'd not have experienced this kind of questioning about my life'

In this instance, the respondent forced to see himself for who he truly is, which is the carrier of an incurable genetic defect that he used to believe he could control. Through developing HIV, the respondent had to face his biological reality as in the past he tried to suppress his identity as a haemophilic person, however due to the serious implications of the HIV virus, the respondents could no longer hide their haemophilia.

A further point worthy of exploration within the area of HIV and identity is the negative stigma attached to the illness. In the above paragraphs, I have explored the effects of illness on identity and identified that some people experience their illness as biographical disruption and therefore threatens the nature of their identity, whereas others experience it as an assault to their physical or emotional self.