5.4 PART ONE: Phases of HIV and AIDS 124
5.5.2 Further Psychological Anxieties 157
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shocked into silence after his immediate family disowned him. His perceived solace came out of immersing himself in his school work, which kept him busy. Although Siwina had her family, she too was lonely. Her little children needed her, and she had to see to their every need. Her parents were old and she did not want to stress them, so she carried the burden of her infection alone. She did not have anyone to converse with at her level. Weiner, Perry & Magnusson (1998) argue that people allocate more blame to those who contract stigmatised diseases that are perceived as controllable and stable than those who have supposedly less controllable and less stable stigmatised diseases.
A sense of loss and loneliness was a common thread that ran through the emotions of the participants in this study, and especially for people living alone. It was clearly seen when Delene expressed her feelings:
I wanted a shoulder to cry on, I wanted to feel the comfort of the family home, I do not want to die.
For Delene, loss and loneliness was exacerbated because she lived alone; she wanted her family around her, she was afraid of death. In Thandiwe’s case, loneliness meant not having anyone to share her secret with. Her daughter is her only child, and her concern was that her daughter will not have a sibling for comfort when she is alone.
Whilst loneliness and frustration has been experienced by all the participants, the issue of self- imposed loneliness must also be taken into consideration. Thandiwe said that she stopped going to the staffroom and Ashwin chose to keep to himself by immersing himself in school work.
Data evidence showed that in addition to the above discussed emotional issues, other psychological anxieties prevailed.
some anxieties are more conspicuous than others during certain phases of HIV. When minor symptoms began to show some of the participants stayed away from people lest symptoms are questioned, and the participant experienced a period of self-stigmatization and isolated him/herself.
Fear of Death and Dying/Suicide
The diagnosis of a fatal, incurable and transmissible illness causes a great deal of fear for future health, for the well-being of children and other dependents and the fear of death. From the time of the initial diagnosis, the HIV-positive person agonises about a sense of borrowed time, and lives with a temporary certainty of each day. Bowlby (1977) explains that separation or loss initiates a process of grief, which is a very basic biological reaction that may cause aggressive behaviour and stimulates attempts to regain the lost object. Annaline and Ashwin expressed their anger when they were diagnosed HIV-positive, anger because they felt they were victims of circumstances. Annaline was infected by her unfaithful boyfriend and Ashwin was a hijack and rape victim. According to Kubler-Ross (1969 as cited in van Dyk 2008), people who are diagnosed with a life threatening virus (such as HIV) often go through five stages of bereavement: shock and denial, anger, bargaining, depression and acceptance. Kubler-Ross (1969) explains that in the first stage the reaction is disbelief, the person is in denial. All the participants in this study experienced this. The next stage according to Kubler-Ross (1969) is anger, anger with God and others who were responsible for letting this happen to them. The third stage is bargaining: people often bargain with God, and also with the virus in the case of HIV, for good health in order to handle the virus, the fourth stage is depression. During this stage, according to Kubler-Ross (1969) the person experiences severe sadness and shows symptoms of depression such as withdrawal, a depressed mood, apathy, tearfulness, irritability and changes in eating and sleeping patterns. The fifth stage is the acceptance stage, where the person has resigned to accept his/her fate. Kubler-Ross explains that these stages may not follow each other, as some stages may be experienced concurrently depending on the individual.
An HIV-positive person experiences varying degrees of anxiety throughout all the phases of the infection. This anxiety is uppermost in their minds because of the prognosis of the illness, the
Chapter Five Indrashnee Devi Appalsamy Analysis: On Analysing Participants Voices and Emotions
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risks of opportunistic infections,15
The fear of death for the HIV-positive participants in this study is an extension of the fear and anxiety of infection and severe impairment because death is perceived to be close. Van Dyk (2008) explains that the anticipation of dying carries with it the same emotional stress as the reality itself. All the participants in this study experienced grave loneliness especially in their hostility, abandonment, isolation, fear of dying and rejection.
The uncertainty of future health and coping also caused anxiety. Thandiwe spoke about her anxiety and her guilt feelings during the time when her health was rapidly deteriorating:
I was very frustrated with myself for causing so much pain for my family, I was also very anxious as to how I was going to cope with my huge dark secret I cannot tell anybody that I am HIV- positive
After their HIV-positive diagnosis, the participants in this study spoke of their illness taking centre stage and thoughts of the future are punctuated with images of death. For Annaline, her HIV diagnosis came as a big blow; she felt that she had lost control of her life. Being a family- orientated person she looked forward to marriage and children, but now HIV was in control, and when the doctor told her the results of her blood test, her immediate response was that her whole world fell apart. She spoke about her sense of loss becoming so conspicuous after her diagnosis:
I long to have a friend whom I can talk to, I don’t have friends anymore, because my frien fled when they heard that I was HIV-positive
Ashwin’s life also did an about turn when he was diagnosed HIV-positive; he too displayed anticipatory grief when he said:
The only thing that I was absolutely sure about was that I had very little time left and that I was going to die soon
Like Annaline, Ashwin also sensed a deep sense of loss:
This pain and stress is killing me, “so near yet so far”. I value my family, “I love them” but they don’t want me
Ashwin, unlike Annaline does not have a partner anymore to talk to and he seemed to be living one day at a time:
I do not look forward to a new day because it is bringing me closer to my grave
15When an immune system is unable to defend the body because it is being destroyed by HIV, opportunistic infections will ‘take any opportunity’ to attack the body. Van Dyk (2008).
work environments and also during their private moments, but an added burden was their anxiety for their close families. Their deep anxiety was expressed during my interviews with them. For Siwina, dying at an early age was uppermost in her mind and her great concern was for her two little children. Anticipatory grief was also experienced by her:
I had fears about wasting away and dying. When I become very ill my children will be neglected.
Siwina’s premature concerns were about her future deteriorating health, and her ability to take care of her children. Thandiwe, too, like Siwina had great concerns for her little daughter who would soon be orphaned:
I look at my little daughter and my heart just breaks, I ask God “why me?” In my prayers I ask God to spare me so that I can be there for her until she is independent, I stress for her safety, I may not always be there to protect her, I can only pray that she will be safe
Some of the participants in this study saw HIV and AIDS as the end of the road situation, they spoke about suicide as a way out. Annaline endorsed this view when she and her then boyfriend discussed their moments after receiving their results:
Tim became suicidal and said there was nothing more for him to live for
Ashwin and Thandiwe shared the same view after they were given their results. Ashwin’s expression of devastation was:
I had to come to terms with my plight. Suicide crossed my mind a few times during the days that followed, why should I go through life with this huge cloud hanging over my head
Thandiwe added:
The stress and anxiety caused my health to deteriorate further, at times I felt that I did not belong in this world, I wanted to run away from home or even commit suicide
Suicide as defined by Valente & Saunders (1998) is the voluntary and intentional taking of one’s own life. One of the participants in this study, Ashwin showed a strong tendency to suicide, when he said:
Suicide crossed my mind a few times during the days that followed, why wait for HIV to decide when my life should end
While HIV and AIDS is a world-wide pandemic, suicide is of grave concern too. According to the World Health Organisation (WHO 2002), almost a million people die annually by suicide
Chapter Five Indrashnee Devi Appalsamy Analysis: On Analysing Participants Voices and Emotions
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across the world, but it is not clear what percentage of these suicides is by HIV and AIDS victims or otherwise. Lonnqvist (2001) adds that there is a significant association between HIV and AIDS and depression and such symptoms as hopelessness. Dorrington et al (2001) refer to South Africa’s HIV and AIDS epidemic as “shattering”.
Harber (2002) argues that up to the year 2002, about 200,000 persons died of AIDS-related illnesses and about 5 million people in South Africa are infected. Schlebusch16
16 See Schlebusch 2004. Current perspectives on suicidal behaviour in South Africa.
(2004) found the fatal suicide prevalence rate for South Africa to be 17.2 per 100,000 of the population and the non-fatal suicide rate up to 20 times more. Hunter (2003) says that not much information is available on suicide among HIV-positive people in South Africa, because the study was difficult due to the high taboo and stigma attached to HIV and AIDS. When a person is diagnosed HIV- positive, grief is another emotion they have to come to terms with because they feel that they have lost everything that really mattered. All the participants in this study feared the loss of their independence and their ability to look after their families. They mourned the loss of life itself. A life-threatening virus like HIV is an experience of psychological complexity and intensity and portends the possibility of death as a final outcome. As human beings we tend to take time for granted. Delene explained that a positive outcome of her HIV diagnosis was her sincere appreciation of life, and after an HIV diagnosis she said that life was very precious. Time is considered a universal part of experience which includes an individual’s orientation to past, present and the future; while people live in the present they oscillate among the three perspectives. Therefore a diagnosis of life-threatening illness heightens the sense of time for the patient and family. Delene moved back into the family home because she wanted to be with her family always; HIV made her see life differently and she believed that each day was a bonus and must be enjoyed with loved ones. She also believed that death would come soon. When a young adult is confronted with a life-threatening illness, he/she experiences the sense that life’s candle has been blown out, especially when the individual has planned and is fulfilling his/her goals.
The underlying anxiety here is the fear that life will end before the individual has the chance to live it as planned. All the participants in this study felt that the HIV infection had robbed them of a chance of fulfilling their goals and living a longer life. The participants were between the ages of 30-40 years. Siwina, Thandiwe and Ashwin are parents with minor children and the children’s future was of great concern to them.
Loss of control was evident in the life stories of all the participants in this study when they described their state of confusion and hopelessness, Ashwin said:
The only thing that I was absolutely sure about was that I had very little time left and that I was going to die soon
Thandiwe said:
I could not see myself even living for the next five years, the future was gone
Delene said:
As I walked out of the hospital, I began crying uncontrollably, I felt so alone I longed to share my troubles with somebody, I was going to die alone
HIV virtually controlled how their day went, hence the hopelessness they experienced.
Thandiwe kept her secret to herself, she did not have a shoulder to cry on:
At night I could not sleep, I used to sit on my bed and weep for my family, for the fact that I was going to die and leave my baby and my family
Ashwin grieved from the time of his diagnosis, but did not have any support from his wife and children. His parents are late:
I do not look forward to a new day because I feel that it is bringing me closer to my grave
Siwina, in her story spoke of her parent’s grief when they were told of her HIV-positive status.
The anticipatory grief experienced by the participants in this study reflects the emotional response to the trauma of separation prior to the actual loss. The HIV-positive person grieves multiple losses, of self, of close family and loved ones. The stress, fear, anxiety and awareness of being alone in facing the unknown are heightened Delene and Annaline discussed the positive side of being HIV-positive as the value they placed on time and relationships, they no longer took time and people for granted. The HIV- positive person lives with a sense of borrowed time and is grateful for the temporary certainty of each day. However, there is the problem as to whether the individual concentrates on living or dying, Ashwin at one stage spoke of suicide, because he could not live with the uncertainty of when death will come, and wanted to put an end to his life and get over with it. Another great cause for concern is when an HIV-positive person gets AIDS
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and suffers opportunistic diseases and becomes very ill. The HIV-positive person anticipates this deterioration in health and stresses about it.
Anxiety accompanied an HIV diagnosis throughout all phases of HIV. Physical pain and the fear of dying in pain and without dignity was uppermost in the minds of many respondents who have AIDS. Thandiwe experienced intense anxiety during this phase because she feared the ability of her loved ones and family to cope after she died.
The low self-esteem that an HIV-positive person suffers is caused by rejection by colleagues especially in the school environment. Rejection brought about a loss of confidence and a loss if social identity, and the inability to continue teaching reduced a person’s self-esteem.
From the data it can be suggested that the participants grieved in anticipation of their future; they also grieved for the friends and family they will be leaving behind. The issue of guilt intensified because the individual saw things in clearer perspective and felt guilty for having contracted HIV.
In Thandiwe’s case she was a victim of circumstances. There was also guilt about the pain, trauma and sadness the family had to endure because of HIV and AIDS.
All participants expressed a sense of helplessness/hopelessness, a feeling that their lives were slipping away, and that they did not know how to handle the days to come. Thandiwe felt a sense of loss from the time of diagnosis, but this loss intensified as the virus progressed. This feeling of loss stemmed from the loss of independence, loss of control, loss of friends, and loss of self- worth caused by rejection. In addition to this, Thandiwe feared that she may lose her job because of her absenteeism during the latter stages of the virus, and with the loss of job the issue of financial stability became a concern.
Stigma and Discrimination,
Crawford (1996) explains that the term “stigma” goes back to the days of Greek civilization, when it referred to a tattoo mark branded on the individual’s skin for a wrong doing. The physical mark publicly identified the blemished individual as one too be avoided. Stigma and discrimination go hand in hand. Discrimination against HIV- positive people is dependent on a
variety of perceptions and misconceptions, such as gender, race and socio- economic status.
Singhal and Rogers (2003) argue that tangible consequences such as denial of rights and segregation in the workplace/school take place and stigma brings about discrimination which causes a violation of rights and this legitimises stigma. The fear of stigma causes anxiety about disclosing one’s HIV status. People who disclose their status may leave themselves open to stigmatization, isolation and loss of self-esteem. None of the participants in this study openly disclosed their status for fear of stigma and discrimination. People who openly disclose their HIV status, are often treated as outcasts, as was mentioned earlier.
When people are afraid to openly disclose their HIV status, denial of the infection prevails, and so does stigma and discrimination; then the means to seeking health advice is discouraged.
Although the stigma of HIV and AIDS is due to ignorance, education alone cannot eradicate the virus, as mindset must also change.
All five participants discussed the hurt and uneasiness they experienced in the school environment; this even made some of them give up their jobs. Annaline gave up her teaching job when life became difficult for her at her school:
I am a living example of an educator who opted out of school because of stigma and discrimination
Annaline believed that a big plus factor in this HIV climate was to talk about the epidemic and ask questions, hence her decision to do school talks, and on one such occasion she was sitting in the staffroom when she overheard educators in the school staffroom. This is what they said:
It’s just another AIDS talk by an infected black person, one educator remarked, with so many partners what’s new. This shows that people still believe that HIV is a black person’s disease
Annaline continued:
By the time I came to terms with my HIV status, the management and staff were already indifferent and unfriendly towards me and I knew that it will get worse if I disclosed my status
On speaking with Annaline’s husband Tim, I learnt that Annaline underwent a very difficult phase in her life (her parents divorced, and she nursed her sick father for many years) and he was thankful that he was with her to provide the support she required. He believed that divine intervention had brought them together. Annaline did say that she was absolutely greatful for her relationship with Tim, adding that had it not been for Tim’s love and support, she would most