This concept shows the reactions and strategies participants used to manage their situation when their life was overwhelmed by HIV/AIDS and its consequences after it turned their life upside down. The participants present a variety of actions/interactions (strategies) of responding and managing (Table 4.1). Strategies that they applied made the difference between being unwilling to live (discussed in the following section) and developing a will to live (discussed in the next chapter). If participants endorse ineffective strategies, they cannot manage their situation and their distress still remains. They continue to be unwilling to live. Conversely, participants who welcome effective strategies and can manage their situation would develop a will to live. The reactions and responses applied to manage HIV/AIDS can be divided into two subconcepts which are “the reaction to”, and “the management of”, HIV. This concept and its subconcepts, as outlined in Table 4.1, will be addressed in the following sections.
4.4.2.1 Reactions to distress
This subconcept is organised around the idea of a variety of reactions that the participants responded with at the time immediately following their diagnosis when their life was invaded by HIV/AIDS. Most participants did not expect to have an HIV- positive diagnosis. They were unprepared and had never thought of contracting this virus. Thus, it was very difficult for them to accept that their lives had become overshadowed by this disease (HIV). Hopefulness became hopelessness. Certainty in life became uncertainty. Beautiful life became dark life. As Nong Wut, who had no idea that he had been infected with HIV/AIDS, said:
On the day that I went to the hospital to receive the result of my blood test [HIV test], I felt happy… I felt very relaxed because I was pretty sure that I would never get infected... At first, they didn’t tell me the result of HIV but they asked me and told me some general idea about this disease... Then, the doctor said to me ‘If you have HIV, you can accept (tamjai) it, right?’ Then, I asked them, ‘What is the result of my blood test?’ then doctor said, ‘You’re infected [HIV]’. ‘Oh!!!’ At that point, I felt, my face… [look pale, to wear a hopeless look]. I was shocked when I heard I have HIV. From smiling to quiet… After that I didn’t hear anything when the doctor talked to me. I was deaf. Speechless, tongue-tied... Then I rode my motorcycle back home. I didn’t know how I got
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back home. I just know… OH!!! I already arrived home. I rode the motorcycle back home unconsciously… I got confused! Deafening! I closed my door. When my mother and sister asked me about the result, I started crying (Nong Wut, 24 April, 2006).
Finding out their diagnosis and realising that they have HIV was the time when they had the strongest reactions such as shock and disbelief and that is when reality became blurred. Some of them became distressed asked themselves the questions “Why me?” and “Why did I get this misfortune?” Some participants underwent blood tests for HIV more than one time and changed the place to have the blood tests done such was their disbelief. Moreover, related to feeling scared of knowing the blood test result, one of them avoided finding out what the result of the blood test was. The “reactions to distress” ranged from shock, disbelief, denial – especially by those who were diagnosed with HIV infection before the ARV drugs were launched – to relief (as outlined in Table 4.1).
Firstly, many participants were shocked, disbelieving, and in denial, at the moment of knowing the diagnosis both of themselves and their partners, particularly those whose lives were heading to a bright future and who therefore felt fortunate. When they discovered their HIV status, they realised that there would be tremendous changes in their life.
I hurt, feel great pain, and suffer [tukjai] when I know I have HIV… My dreams and my hopes will not come true… The words when doctor said “you are infected with AIDS” still remain in my memory... I prepare myself to do ANC [antenatal care] when the doctor said I have HIV I was completely shocked. I couldn’t believe it. The tears come even today... I had never thought [about this disease]. I can’t believe it. The most suffering in my life, the worst situation, still remain in my mind(Pee Ning, 03 March 2006)
.
Secondly, in addition to the suffering discussed in the previous concepts, some participants think about ending their lives. Questions arose for which there was no answer, for instance, “Why do I have this disease? What are the things that make me
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become like this? How long will I live? What will be happening in the future? Am I about to die?” They lost hope for living.
When I knew [being diagnosed with HIV/AIDS], I didn’t have anyone that I could talk to… I felt very depressed because I thought I have no other choice but dying. I didn’t want to sit [socialise] with anyone or go walking about around the neighbourhood even though no one knew [about my infection]… But I knew about it [HIV/AIDS infection]… It was there inside of me. I didn’t want to eat, just lost appetite…kept quiet at home, waiting to die. I thought if I have this disease I would definitely die. Sometimes, I thought of committing suicide, hanging myself…I thought about it (Pee Yai, 31 March, 2006).
The moment I thought of committing suicide… I felt very lonely. I felt I had no one beside me. When I went somewhere, I felt anxious. Lost confidence. I felt scared to do anything. For my mother, she is a seller of Thai dessert but she couldn’t sell because the neighbours were disgusted. When they don’t buy her desserts, my mother cried. So, I thought I’m the person who causes the burden. I’m the source of the problem. I felt very hopeless and distressed
...
I think maybe it is better if I die (Nong Koy, 07 March, 2006).The suffering affected not only the participants but also their children and family members. Some participants were focused mainly on their children and asked, “Will my baby get this disease?’ Therefore, to stop the cycle of suffering from having HIV, although all participants feel scared to die, some of them – in particular, women – thought of committing suicide, attempting suicide as well as killing their children or thinking of having an abortion. Some of them often think of committing suicide. Although “killing” is very difficult and sad for them, they saw this as the best way to end all the problems.
[At ANC clinic]... I thought if my son has this virus [HIV], I would decide to kill him and kill myself. I don’t want anyone to know. I don’t want to tell anyone. Only the doctor and I know and that is enough. I asked the doctor to not tell my family. And I told doctor that “I don’t want to live” (Pee Taw, 04 May, 2006).
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This finding is consistent with the findings from a study by Cooperman and Simoni (2005) on suicidal ideation and attempted suicide in women living with HIV/AIDS which showed that suicide ideation was high: 78% have suicidal thoughts after their HIV diagnosis and 26% reported a suicide attempt following diagnosis. Moreover, motherhood was a significant predictor of suicidal ideation and suicide attempts. HIV- positive mothers may have to struggle financially, deal with the issue of disclosure, fear discrimination against their children, and face the possibility that they will not be able to see their offspring grow up. Also, they may have to care for HIV-positive children, cope with feelings of guilt and fear about passing the virus onto their children or potentially leaving them. They also worry about their families having to care for them if they become incapacitated.
Thirdly, some participants reported confused and mixed up feelings such as sadness, blame and anger, worry, stress, fear, grief, and guilt. Two participants reported that they felt angry both with the person who infected them and with themselves for having walked into the risky situation. “I feel angry with myself that I love him [and he infected me with HIV] (Nong Nid, 24 September, 2006). “I feel angry with myself for walking into this bad thing” (Nong Keng, 11 April, 2006). Three participants perceived that it was “unfair” because they were not bad people. They were not the cause of their disease but they have faced the stigma from having HIV.
A number of participants reported feeling grief about their destiny and life because their life was suddenly turned upside down. They suffered most when they could not share their feelings of grief with anyone else. Nong Nid and Nong Ja said that they laughed at their workplace but cried at home. It means they pretended that nothing happened to them while they were at work but when they were alone, the suffering overwhelmed them and they cried. As Nong Nid said:
I cried to myself every day…and I asked myself, “Why did I get HIV? Why has my life become like this?” (Nong Nid, 13 May, 2006).
Some participants described the sense of guilt and shame related to engaging in risky behaviours and then infecting their partners with HIV/AIDS. Also one participant had not followed her mother’s teaching. She became a prostitute and was infected with HIV.
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Lastly, feeling relief – which occurs in five situations: 1) those who expected to have HIV because of either their risky behaviours or knowing their partners had HIV. If they felt shocked, it was not for so long and they were able to cope with their situation because they had more time to reconsider or review their life, 2) those who had no idea about HIV/AIDS, 3) those who were healthy when diagnosed with the HIV virus, 4) those who were diagnosed with HIV/AIDS when ARV drugs were available, and 5) those who related HIV/AIDS with karma. At least five participants reported that they never felt blame or anger towards anyone, including their partners who had infected them with HIV because they believe that they have this disease from their partners because of their own karma. Also, they have this husband who infected them with HIV because of their own karma as well (discussed in more detail in Chapter Six).
These reactions to HIV/AIDS were congruent with findings from many studies that show that when participants receive an unexpected diagnosis of HIV or other serious diseases the common reactions are shock and disbelief (not me), fear, and denial (Baumgartner, 2007; Firn, 1995; Klunklin & Greenwood, 2006; Namjantra, 2003; Nichols, 1985; Siriwatanamethanon, 2008).
4.4.2.2 Managing the situation of having HIV/AIDS
This subconcept showed the strategies that the participants used to manage their life altering situation arising from HIV/AIDS and its consequences. The participants encountered an abundance of difficulties. Some of them felt reluctant to tell people, even those who were close to them, that they had the HIV virus. They were concerned that revealing their HIV status would bring harm to themselves. Therefore, the strategies for managing the situation of having HIV/AIDS come from seeking both personal resources and some other limited resources. In addition, some ways of management are effective but some are ineffective. Eight strategies were identified in relation to “managing the situation of having HIV/AIDS” in order to handle the suffering as outlined in Table 4.1.
Firstly, some participants engaged in writing a diary. A number of participants reported that although they felt distress, they could not express their feelings to anyone.
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When I know I have a lot of worry, I feel worried that my mother will know. I cannot sleep… I feel stressed. But I cannot let them know I feel stress. I pretend that I am happy. I pretend that I have no disease (Pee Orn, 10 August,
2006).
One participant had no chance to express feelings of suffering, sadness, giving up, therefore, she wrote a diary. At first, she intended to write the diary for expressing her feelings, and to say goodbye to both her mother and her son, and she asked her mother to take care of her son. However, when she re-read her diary, it helped her to refrain from committing suicide.
I felt much stressed. I don’t want to talk to anyone. I don’t tell anyone because I don’t want them to worry about me. I release my stress by writing a diary. At the time, I felt despair, give up and I want to die (Nong Moo, 22 April, 2006)
Secondly, for some, it becomes a matter of concealment and camouflage, due to the stigma of having HIV which is associated with feelings of inferiority and loss of confidence of self esteem (as earlier discussed), together with a mistrust of others – including people who they were close to, and had a good relationship with. These worries lead the participants to prefer to resort to camouflage of signs and symptoms and keeping their status of being HIV positive a secret. As one participant said:
Only if the society accepts having HIV or does not discriminate against people who have this disease, we are able to live with happiness. Unfortunately, in reality the society tend to reject people diagnosed with HIV. That is why we have to keep our diagnosis confidential (Nong Nid, 13 March, 2006).
This strategy was also to protect themselves and their families from stigma. Although this means of coping can relieve their torment in the initial stage, concealing themselves from the public increasingly leads to further loss of confidence and inferior feelings as well as a lack of support. The period of concealing of HIV status ranges from a few months to the whole life. Some participants even at the time of data collection (who had been living with HIV/AIDS more than five years) had not told more than two people except health professionals about their HIV status. Almost all participants preferred to
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conceal their HIV diagnosis as long as they could. The degree of concealment can be ranked from not concealing to fully concealing. It depends on many factors such as social support, social status, occupation, and the nature of the social environment. Although some participants start to tell other people who are close to them and whom they trust, only a few of them fully revealed their HIV status to the public.
Ways of concealing and camouflage differ from individual to individual. The participants described many ways of concealing in order to avoid being stigmatised. The most common strategy is keeping their diagnosis of HIV/AIDS confidential, suppressing the symptoms, avoiding social contact which includes moving from one place to another such as going to live in a temple as a place of sanctuary, controlling the disease, keeping hidden visible signs and imperfections on their body. They stated that “if there are no symptoms, there is no discrimination and stigma”. Some participants, although they work as volunteers, still keep their HIV status secret from the public. They also hide their medications and keep their prescriptions for ARV drugs hidden. Another way of concealment is by trying to take care of their physical health in order to prolong their life and not die while they are young of the symptoms of AIDS.
If someone asked me what kind of medicine that I take, I told them that it is vitamins (Pee Ying, 18 March, 2006).
When my friends asked me what medicine I take, I told them I take analgesic drugs. I lied to them… Also, I use my mobile phone to remind me when I should take the medicine. They don’t know about that (Pee Pang, 18 March, 2006).
Furthermore, some participants chose to avoid social contact and end their social interaction in order to avoid the continued disparagement that erodes their self-esteem, and to protect themselves from feelings of inferiority. These choices both reduced the stigma and prevented the stigma from affecting their family.
If I compared myself with my old friends, I felt I have a low self-value. I am a valueless person. I don’t like to meet them. I don’t like to talk to them. I feel that there is a gap between my friends and I… I don’t like to meet them. I wouldn’t want them to know [I got HIV infection] (Pee Ning, 13 March 2006).
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I stopped work for three years. I don’t go out. I stay at home. I stop any kind of social contact…because I feel worried that if others know that I have this disease, my family will face difficulty. My family will be in trouble (Pee Kid, 30 March 2006).
Thirdly, some try forgetting and ignoring the problem. This is a way of distracting themselves from their suffering and trying to forget their pain. They have to learn to divert their mind from HIV into other things or try to forget having HIV/AIDS. They would stop thinking by making a busy life and escaping or running away from the reality of the diagnosis by concentration on other things. These actions result in both positive and negative consequences.
I tried not to think, stopped thinking about being sick and dying because I thought it would happen. I just spent my life as joyfully as I could (Nong Keng, 11 April, 2006).
I have to spend time with friends because it helps me to stop thinking in circles about my health problem. If I stay alone, I feel lonely and worried (Pee Orn, 10 August, 2006).
A young participant turned to alcohol in order to forget her suffering. However, she found that going out and drinking alcohol to relieve her feelings of anger, sadness, and loneliness helped her to forget for a short time only, and it destroyed her health. Also, her suffering and sad feelings still remained after she recovered from the hangovers. By applying this strategy, the feeling of relief from her distress lasted for only a short period of time.
Surprisingly, some other people adopted strategies that were effective to divert their minds (forgetting) and so that no further harm would be caused to their health, such as reading a book, planting, raising a pet, praying and making a vow, doing good deeds, going to the temple, and meditation. These strategies not only distracted them from their suffering, but also supported them by calming their minds. For instance, basically at first, they do meditation or pray to divert their mind from suffering, but later, those activities help them to possess a calm mind and peace. Furthermore, the advantage of
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