As has been discussed in the previous section, chronic illness such as HIV/AIDs can cause disruptions in a variety of ways to individuals. The disruptions, according to (Hyden, 1997), can be in the assumptions that people hold and in behaviours and people’s explanatory systems. The disruptions may require a rethinking of biography and self-concept in response to the disruption. According to Söderberg et al. (1999), problems common to chronic illness include their long duration and the altered life conditions, which may necessitate transitions or changes in all aspects of social life of the ill person. In a study on disruptions in the lives of women living with chronic fatigue syndrome and fibromyalgia, Asbring and Närvänen (2002) concluded that people with chronic illness suffer from loss of identity and are constrained to create new notions of identity after onset of illness. These notions relate to how they come to terms with their newly arisen identities.
Among the key findings in their study, Asbring and Närvänen (2002) reported that the illnesses involved a radical disruption in the women’s biography that had profound consequences for their identity particularly in relation to their work and social lives; that
24 biographical disruptions are partial rather than total, calling for different degrees of transformation; and that many of the women also experienced illness gains in relation to the new identity. A study by Millen and Walker (2001), revealed that a positive HIV diagnosis necessitates an “involuntary, irreversible and undesirable status passage” among affected individuals leading to corresponding alterations in self-identity. In this section, both conceptual and empirical literature is presented relating to the effects of HIV on the social relationships, capacity to fulfil social obligations, and perception of self of people diagnosed and living with HIV.
1.6.1 Effects on Social Relationships
Man is a social being and as such, spends most of his life in the company of others. People belong to various social groups which can be of a primary or a secondary nature. Primary groups are those in which people maintain close face-to-face interactions with each other (Ferrante-Wallace, 2013; Wallace and Wolf, 2005). A number of studies have found links strong between social networks and social support with several benefits for people experiencing adverse circumstances such as life with a chronic illness (Dageid and Duckert, 2008; Dlamini et al., 2007; Makoae et al., 2008). In a literature review concerning the benefits of social support for PLHIV, Zhang et al. (2009) found that social support had the potential of boosting the immunity and delaying development of full-blown AIDS. Social support also made it possible for PLHIV to take up active coping strategies and improve adherence to medication. Moreover, social support was found to enhance psychological well-being and mental health besides improving the general quality of life of PLHIV and reducing the impact of stigma and rejection (Zhang et al., 2009). However, when one is ill with a chronic and terminal illness such as HIV, the social support and strong social networks that are necessary for a good quality of life are not always forthcoming.
Among the effects of HIV on one's social self are exposure to discrimination, stigmatization and social exclusion (Dlamini et al., 2007; Majumdar and Mazaleni, 2010). Some of the stigmatizing attitudes reported in the literature directed at PLHIV included apportioning of blame, insults, avoidance and accusations as well as hostility (Nattabi et al., 2012). Being HIV positive may also result in one being subjected to discrediting definitions of the self, social ridicule, being laughed at and judgmental attitudes. For instance, in a study conducted among PLHIV in South Africa, PLHIV were referred to as prostitutes, and as “walking corpses” or “slow poison” (Dlamini et al., 2007; Majumdar and Mazaleni, 2010). Social relationships may also be strained thus leading to denial of individual rights, being
25 abandoned, separation or being socially excluded by family members or spouses (Nattabi et al., 2012).
Other possible consequences of HIV on social relationships may include rejection, verbal abuse and dependence upon others (Dlamini et al., 2007; Majumdar and Mazaleni, 2010). In a study conducted in Thailand among HIV positive women, Liamputtong et al. (2012), reported that one respondent received a rejecting treatment from the mother when she let her know of her HIV status. The mother stopped talking to her and tried as much as possible to avoid her.
She was also made to use separate utensils from the rest of the family and to eat in a separate room. Additionally, she had to use separate facilities for washing her clothes.
In another study involving 9 PLHIV and 9 direct informal caregivers in rural areas of Eastern Cape Province of South Africa, Majumdar and Mazaleni (2010) found that PLHIV not only received minimal support from friends due stigmatization but also lost some of their friends.
It was also reported that the PLHIV were not liked and people were not concerned about them for fear of contracting HIV. There was a general lack of acceptance and accommodation of PLHIV. Acts of physical violence, whereby people whose status became obvious through self or disclosure from other quarters were chased out of the family house, were also reported. In most cases, the victims were women. Sometimes the physical violence was only aimed at the possessions of the person living with HIV (Dlamini et al., 2007).
Research indicates that HIV may also affect the relationships between school-going children and their peers. This could happen in cases where fellow students or pupils discover that either one or both of the parents of a fellow pupil are either ill or have died of HIV-related ailments. In a study by Xu and colleagues (Xu et al., 2010), 11% of orphans reported that their relationship with their peers had worsened as a result of illness or death of their parents due to HIV/AIDS. About 25% of orphans reported significantly higher levels of teasing by fellow pupils compared to non-orphans. In extreme cases, children may experience violence by association whereby due to the status of one's parents, they do not receive good treatment in school (Dlamini et al., 2007).
The need to provide care and support and help meet the basic needs of PLHIV—especially during times when they are critically ill—may stretch the material, emotional and physical capacity of caregivers, leading to a burnout or fatigue. The need to stick to treatment regimens, the physical incapacitation, and bodily appearance may make the ill person avoid social occasions leading to social isolation (Charmaz, 1983; Corbin, 2003; Nettleton, 2006).
One can also be consigned to self-imposed isolation due to uncertainty of how one will be
26 treated should one's HIV status be known. This can translate to PLHIV avoiding intimate relationships by either remaining celibate or alternatively by entering into an intimate relationship with a person of similar status (Nattabi et al., 2012). Due to fear of commitment to help, friends may avoid the ill-person (Zhang et al., 2009). Once a person is diagnosed with HIV, intimate relationships can be broken. According to a study by Anderson et al. (2009), a man reported that his previous relationship broke up because of his status.
As has been presented from the review of the literature, being HIV positive has an impact on interpersonal relationships. HIV has the potential of determining on how one can relate with family members, friends, relatives, faith group members and workmates. Being HIV positive also has an effect on how one is treated by health care professionals. Among the effects in relationships that HIV can lead to are experiences of stigmatization and rejection. HIV can also impede the way one relates and interacts with significant others such as family members friends and relatives. This is because infection with HIV disrupts common meanings and understandings concerning the attribution of meanings to the illness experience and issues concerning the way one contracted the illness.
1.6.2 Effects on Capacity to fulfill Social Obligations
Conceptions of self are an outcome of the capacity to fulfill or carry out tasks that are critical for each dimension of the totality of a person's being. This means that who a person perceive him/herself to be is inextricably linked to the ability to fulfill the various role expectations related to the respective social statuses. A mother, for instance, should be able to perform both the reproductive (bringing forth children) and productive (nurturing) functions. She should not only be able to bring forth children and raise them, she is also expected to maintain the household, prepare meals, do the household chores and so on. As a wife, she should also be able to fulfill the needs of her husband. To fulfill these roles, she should have the emotional, psychological as well as the physical capacity to do so. However, when one is diagnosed with HIV, the concept of self may be altered—since a breach is likely to be created either in the physical, emotional, social or psychological aspects of a person's being—thus undermining the capacity to fulfill the expected roles effectively (Corbin and Strauss, 1987).
According to Corbin and Strauss, there are several aspects to role performance. The roles can either be “routine or problematic, simple or complex, long or short, visible or invisible to others and so on...” They argue that “the term performance denotes both the capacity for action and appearance...” (Corbin and Strauss, 1987). Appearance, according to Corbin and Strauss, implies both how one appears to himself and to others and how any action performed
27 appears. Appearance of action to others means what others who witness the performance think about the performance. Others can judge a performance either as a success or a failure based on whether or not the actor effectively carried it out. Any performance can have several target audiences or beneficiaries: These include actions performed (1) for the sake of other people, (2) in the presence of other people (3) with other persons and (4) through other persons (Corbin and Strauss, 1987).
Extensive research on chronic illness by (Corbin and Strauss, 1987), indicates that the ability to successfully perform social roles, irrespective of the nature of the performances or the respective audiences to these performances, can act as a major boost to a person's conception of self. They further argue that the reverse is true: that failure to effectively perform one's role-related duties and obligations for whatever reason is likely to lead to a diminished conception of self. Consequently, people are likely to gauge who they are in terms of what they can do (Corbin and Strauss, 1987). In this sense, it was anticipated in the study that ability to perform the routines of daily life including being able to engage in physical and productive activities such as farming would be an important aspect for PLHIV.
PLHIV are likely to claim a dignified self-esteem due to their ability to successfully engage in the affairs of everyday life. On the other hand, it was expected that those who would not be able to successfully carry out the social obligations would likely have a diminished sense of self. Among those who were hypothesized to have a diminished sense of self were to include those who would either be experiencing heath difficulties (due to weakened immune system and would either bedridden) or those who lack the social support networks and material resources to carry on with life (Charmaz, 1983; Corbin and Strauss, 1987).
In a majority of cases, unsuccessful performance is thought to be largely due to a body that is considered a “failed body” (Corbin and Strauss, 1987). A body can be considered to be a failed body if any or all of the following conditions prevail. These are reduced ability to do things and alterations in appearances; diminished or inability to receive sensations in given body organs; breakdown in the human communication process and changed awareness of things. Any or all of the above mentioned conditions can make it increasingly difficult for a PLHIV or with other chronic illness to carry out role-specific performances successfully. As such, circumstances that help restore capacity for action were hypothesized as being major boosters to the self-identity of PLHIV (Corbin and Strauss, 1987). Through reference to the illness trajectory model, the PI was expected that PLHIV who were as yet not experiencing the unstable and downward phases would have positive conceptions of self. This was likely to
28 be explained by their continued capacity to engage in their daily routines and ability to successfully carry out these performances. Those who would have already experienced or would be currently in either of these phases was expected to manifest a greatly diminished conception of self.
1.6.3 Effects on Perceptions of Self
According to Mead (Corbin and Strauss, 1987), “the self is the continually active reconstruction of events and planning of actions in relation to objects, so different aspects of self are different processes in relation to different objects.” On the other hand,
Conceptions of self refers to personal identity, a self-classification of who I am over the course of my biography. These conceptions are formed through integration of various aspects of self into a more inclusive whole. Every aspect of self corresponds to a given set of tasks that must be performed in order to fulfill the expectations of the particular social role. For this reason one can be a professor, mother, writer, piano-player and wife all at the same time. These tasks, like all those related to various aspects of the self, take place over biographical time, for they are part of one's past, present, and hopefully, the future. In turn, continual performance of self-related tasks requires a functional body (Corbin and Strauss, 1987).
An HIV-positive diagnosis can lead to a change in the flow of one's life in terms of one's priorities, life projects and dreams. PLHIV face the reality of resorting to shorter term plans, altering many aspects of their lives and organizing everything around their illness. This is particularly with regard to the treatment regimens, illness episodes and specific emerging symptoms. Additionally, a PLHIV is confronted with the burdensome task of coping or adapting to the various dimensions of the illness career with unlimited social, physical and psychosocial ramifications (Carel, 2008; Freund and McGuire, 1999; Nettleton, 2006). As Baumgartner (2007) has argued, the changes may involve identity centrality, whereby the HIV positive status becomes the center around which the lives of PLHIV revolve.
The self can be assaulted by chronic illness in very fundamental ways since the illness attacks the body—the physical being. The body is the medium through which people present themselves to and interact with the social world. Indeed the body is very basic to social interactions since humans are embodied beings (Carel, 2008; Freund and McGuire, 1999).
Subsequently, any assault or attack on the body is likely to have implications for social interaction. A person’s sense of self or social identity is based on what he/she believes others think about them. If a person’s interpretation of what others think about him/her is positive,
29 then this may lead to a positive self-image. On the other hand, if one thinks that others think negatively about him/her, this may lead to low self-esteem. People's reactions to the self can either be positive or negative depending on their evaluation of the body. Accordingly, it is important that an individual’s body is in its normal or near normal state as much as possible.
This sense and experience of normality is however undermined by chronic illness (Bury, 1982; Carel, 2008; Charmaz, 1983; Freund and McGuire, 1999; Nettleton, 2006).
The conceptions of self can also be affected when the illness is unmanageable and undermines the person's ability to live a normal life. Literature indicates that when the person is so subdued and is unable to organize his life or perform daily tasks, they may be flooded with thoughts of suicide. When a person cannot effectively fulfill their social obligations (such as those of mother, father, spouse, worker, community member, Church member), then the person's self-image is likely to crumble and they are likely to suffer an identity crisis. The crumbling of a person's identity may result from episodes of illness or overwhelming sense of grief or loss associated with a HIV-positive diagnosis consequently rendering one physically, mentally and socially incapacitated (Carel, 2008; Charmaz, 1999; Freund and McGuire, 1999).