state of health, their emotional well-being, coping ability and their support base. Mention was made earlier that HIV-positive people experience both physical phases and varying emotions caused by HIV. As indicated in the introduction, these phases have been represented in a way that articulates with the development of each participant and may not necessarily reflect the general trend for others who are infected. My discussion on the physical phases is an adaptation from van Dyk (2008). Figure 5.2 represents the framework that has been used to represent these phases. The physical phase is generally visual and tangible whilst emotions are experienced.
These phases map the journey traveled by an HIV-positive person, from the struggles and initial shock of the virus to managing and adjusting their lives to live with HIV. HIV and AIDS were almost unheard of about 30 years ago, but has now become a major part of life for many people around the world.
In discussing the physical phases of HIV (Figure 5.2), it is noted that during the Primary Infection Phase, only Ashwin knew of his HIV-positive status, and none of the other participants suspected that they were HIV-positive. Their fever, tiredness and flu-like symptoms (according to the data) were dismissed as common colds. Similarly, during (phase 2) the Asymptomic Phase, generally referred to as the ‘silent phase,’ all the participants with the exception of Ashwin was not even aware that they were carrying the virus. In the context of this study, this phase is referred to as the ‘silent phase’ because the virus is in incubation and there are no visible symptoms. During Phase 3, the Minor Symptomic Phase, Annaline, Delene, Siwina and Thandiwe became anxious when coughs lasted more than three weeks, the rash on the body became irritating and tiredness and lethargy prevailed; weight loss was a cause for concern.
Although Ashwin was a relatively strong person, the issue of being HIV-positive was a remainder to him that his body was invaded by the HI Virus and this clouded his demeanor and made him miserable.
With reference to Figure 5.2, four of the participants in this study were in Phase 3 of the physical side of the disease. In the next stage, phase 4, which is the Major Symptomic Phase, the immune system becomes compromised and opportunistic diseases begin to appear. Phase 5, the Severe Symptomic Phase, is the AIDS stage, from which the patient’s health deteriorates fast to Phase 6, death. Data evidence shows that all the participants in this study were anxious to learn about the virus in order to practise a safer lifestyle, and also to know how the virus will progress and what
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 123
precautions need to be taken. Annaline spoke about her health status changing from Phase 3 to Phase 4, and then back to Phase 3 (see appendix for life stories, this reference will not appear elsewhere in the chapter). Annaline2 has been living with the virus for the past 12 years, Ashwin3 for 5 years, Delene4 for 9 years, Siwina5 for 8 years and Thandiwe6
HIV infection is divided into different phases theoretically, as suggested by van Dyk (2008), but in practice, these phases are not separate: they merge and are not easily identifiable. An HIV- positive person may not necessarily move in order from one phase to another, as the progression or development of HIV-related symptoms of the virus will depend on the health of the person’s immune system. As this analysis progresses, I will attempt to discuss the lives of my participants lost her fight to AIDS within 18 months. The participants in this study were determined to manage the virus like a chronic ailment and to be around for their families for as long as possible.
While the physical phases of HIV were experienced and visible, the emotional aspects of the virus posed another challenge. The participants in this study spoke of the pre-disclosure aspect of HIV disclosure as very difficult, in which they had many debates and emotions raging within their minds, such as coming to terms with the diagnosis, understanding the virus and the negativity surrounding it, the decision to disclose or not to disclose, and most of all not knowing what this virus is going to do to their bodies.. Emotions do not have clear cut boundaries; but vary from person to person. Disclosure varies from person to person, as the HIV-positive person will disclose when he/she is confident of support from family and friends, or may never disclose.
In the context of this study, the participants had to learn to adjust to the situation when he/she would have more or less come to terms with the situation and is in the process of adjusting his/her lifestyle. Delene voiced her anxiety about the symptoms that would appear during the symptomatic phase and the virus cannot remain ‘hidden’ anymore, she and her family members believed that the end may be near, she may even be hospitalised. Thandiwe moved through all these phases of HIV and AIDS rapidly and as mentioned, within 18 months succumbed to the virus.
2 See appendix 1 for Annaline’s story
3 See appendix 2 for Ashwin’s story
4 See appendix 3 for Delene’s story
5 See appendix 4 for Siwina’s story
6 See appendix 5 for Thandiwe’s story
as they share what is inside them with what we see on the outside. Their testimonies describe their feelings, much of which is beyond our comprehension
Many themes emerged from the life story interviews with the participants. I categorized the data collected from the interviews into common themes that emerged from the life stories, I will discuss the various themes within the HIV phases to show the impact of the various emotions (themes) on the HIV-positive person. These themes were loosely linked into similar categories to provide insight into the trials and tribulations of educators living with HIV. The following themes emerged from the data collected from interviews:
• Shock, fear, anxiety, disbelief, confusion and devastation, anger, shame, guilt, blame, depression, stress and spouse’s anger.
• Secrecy, suicide, isolation, rejection, loneliness, frustration.
• Loss of self image, lifestyle change and self-motivation.
• Stigma, discrimination and exposing family to stigma.
• Denial, vulnerability, trauma and pain, accepting the situation.
• Poverty.
• Need for empowerment and support, empower management, departmental support, support groups.
• Workplace insensitivity, name calling/labeling, ignorance and deteriorating health.
• Absenteeism, angry colleagues and work backlog, disclosure at school.
• Coping problems and financial burden.
In the next section, part one, I will discuss the phases of HIV infection .and the impact it had and has on the participant’s life.