5.4 PART ONE: Phases of HIV and AIDS 124
5.5.1 Initial Psychological Anxieties after Diagnosis 135
5.5.1.6 Denial 147
Denial takes away the pain and allows the HIV-positive person to cope by being in denial. All five participants in this study were in denial at some time and they spoke of how being in denial helped them come to terms with the disease temporarily.
Annaline said:
Besides feeling drained of energy, having itchy skin and bad headaches, I did not have all the other symptoms, so maybe I will just put this whole thing behind me and carry on like I usually did and pretend that it was a bad dream
Ashwin explained:
I then went on a mission blaming myself, at the same time determined to keep my secret. I was in denial, maybe the blood tests got mixed up, I may have got someone else’s results
Ashwin added that he went through a period of introspection and realised that
his denial had caused him to shut his mind out to most things and sleep. At times he had forgotten who he was and why he was there. He said that it was like having a nightmare, just that nightmares went away when you got up and his stayed with him even when he was awake. He further shared that,
Being in denial and putting on a brave front caused an emotional drain on my life and I became extremely sick. I suffered high fevers and constricted breathing; at times I wanted to overdose myself so that I will not have to face another day
Delene also found her HIV-positive diagnosis very difficult to accept:
I did not handle this news, for almost six months I told myself that I was having a bad dream and that I will soon get up and realize that it was all a bad dream
Siwina was vocal about her feelings and firmly believed that the doctor must be wrong. She was also upset by the other people in the surgery, as they just looked at her unsympathetically. She further added:
Me HIV-positive, no, never, I need a retest, this time with another doctor
She refused to believe her HIV-positive results, because she was and still is a one-man woman, and could not believe that she was HIV-positive. Siwina felt the need to be absolutely certain about her diagnosis and her denial was uppermost in her mind. She explained that she went to another doctor to have a second blood test. She questioned herself as to why she was having a second blood test, and again she could not believe that she was HIV-positive: she was a faithful wife and could not be HIV-positive. She did some positive thinking and told herself that her blood test would come back negative, but she was wrong.
Thandiwe too, was very upset about her diagnosis,
I felt that my life completely stopped, I couldn’t breathe or speak. When I gained my composure, all I could say to the doctor was, ‘I don’t believe you, it is a mistake
Chapter Five Indrashnee Devi Appalsamy Analysis: On Analysing Participants Voices and Emotions
D.Ed Thesis: An insight into the experiences of educators living with HIV and AIDS in the context of
schooling and beyond 149
Van Dyk (2008) argues that most HIV positive people go through a phase of denial. She describes denial as a defence mechanism which temporarily reduces emotional stress. She further explains that people who are in denial over a serious matter, be it a personal problem or illness, will experience greater emotional ease on the initial occasions, but will pay for that ease by continued vulnerability on subsequent occasions. When the participants in this study got their HIV-positive diagnosis, their first reaction was one of denial via utterances like, “no, not me,” or
“there must be some mistake”. This denial behaviour was noticed in initial responses made by Annaline, Ashwin, Siwina, Delene and Thandiwe.
Denial in a life threatening infection, such as HIV, is considered ineffective because the person fails to engage in appropriate coping strategies such as counseling and/or medical attention.
Denial could be looked upon as a stay of execution because it closes the mind to whatever could be threatening. Lazarus (1983) and Carver et al (1989) include denial as a possible emotion- focused mechanism used by humans to deal with stressful encounters. Lazarus differentiates between denial as beneficial, when used in uncontrolled or acute situation, and denial used in controlled situations which may be harmful, since it prevents the person from exercising the appropriate precautions against danger. Ben-Zur and Breznitz (1997)14
14 See Ben-Zur & Breznitz (1997) Denial, anxiety, and information processing, for more information on theoretical approaches to coping.
explained that denial has been included in the framework of at least three different theoretical approaches to coping and adaptation namely: (1) the defence mechanisms derived from psychoanalytic theory; (2) self- deception tactics from the evolution theory of deception, and (3), coping strategies developed in stress theory and research. With reference to Ben-Zur and Breznitz’s theoretical approaches to denial and coping, all five participants in this study used denial as a defence mechanism for coping with the shocking news of their HIV-positive status. Siwina went to the extent of having a second blood test. Self-deception tactics were also used by participants, as when Annaline deceived herself when she said that besides feeling drained of energy and having itchy skin and bad headaches, she did not have any other symptoms. Ashwin also indulged in self-deception when he said that maybe the blood tests got mixed up and that he may have got someone else’s results. Coping strategies were also used much later into living with the virus when participants discussed their change of lifestyles in order to promote their health status.
Bowler et al (1992: 357) say that “many young people tend to feel vulnerable to HIV and AIDS…others practice denial as a means of coping with experiences perceived to be beyond their control”.
For an HIV-positive person to accept his/her HIV-positive diagnosis, is not something easy and normal. It is not like any other illness, because of the manner in which HIV is perceived to be transmitted. Denial, here was used as a coping mechanism. As discussed earlier, many emotions come into play. There are other life threatening illnesses and diseases that people contract and suffer from, but the fear and acceptance of an HIV diagnosis is somewhat different, and frightening not only because of the negativity surrounding the virus, but also the ignorance about HIV and its infectious nature. Another important issue for an HIV-positive person is where the individual is coming from, a background of love or a background of fear, and handling HIV is influenced by the baggage an individual is carrying. A caring background/environment will make disclosure easier.
All five participants shared their experiences about accepting their HIV diagnosis. Annaline’s problem was coping with the virus:
I needed time to think about this but time was not on my side, this stress of my diagnosis was making me sick and the thought of not being able to cope was almost destroying me.
For Ashwin, an HIV diagnosis was the furthest thing from his mind:
My HIV diagnosis came as a huge shock to me, it could either break the individual or make the individual. In my case, it broke me
Delene explained that the news was a life-changing experience; she disguised her disclosure by using an avoidance tactic:
I could not disclose my status to anyone just yet, I had to think about it first, I had to hold back tears, and tell everyone that I had l leukemia, no ways could I tell my colleagues that I was HIV - positive, I would lose my job and be thrown out of school
For both Siwina and Thandiwe, their families were uppermost in their minds, but after the initial shock, they went about doing whatever they could to help themselves. Siwina was anxious to equip herself with knowledge of HIV and AIDS:
The first thing I looked for in the HIV books was the HIV symptoms and as I read I recalled
Chapter Five Indrashnee Devi Appalsamy Analysis: On Analysing Participants Voices and Emotions
D.Ed Thesis: An insight into the experiences of educators living with HIV and AIDS in the context of
schooling and beyond 151
my husband complaining about tiredness and loss of appetite and these were symptoms of HIV
For Thandiwe, her family’s reputation and safety was very important, so she kept her HIV- positive status a secret:
I loved my family and did not want to stress them anymore. I decided to carry this burden alone to my grave. But I was going to keep myself well, up and about for as long as I possibly could. I want to be with my daughter for as long as God will allow me to
From what I gleaned during the interviews with the participants, it is evident that their greatest fear arose from the stigma surrounding HIV. Delene spoke of her fear of being thrown out of school if her colleagues knew of her HIV positive status. From this verbal outburst, it is clear that the virus took second place to stigma. Religious and faith issues (according to the participants) are generally present when serious illnesses befall an individual or community and it was not uncommon for the participants to suggest that ancestors can punish their people by sending illness and misfortune if people violate social norms and taboos. However, while there is no literature that attributes AIDS to the anger of God, some African Christians believe that AIDS is a punishment from God for immorality and sin (van Dyk, 2008).