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group and openly declared her status indicate that it took a lot of strength to convince her children of the importance of public disclosure. She said that:
My children nowadays understand my status, they support me with medication. I am the one who told them, the elder one did not want to understand my situation, but the younger one was ever supportive. The elder one in fact did not want anything to do with my being HIV positive (Libuseng1).
This statement denotes that Libuseng1 had a tough time to make her children accept her HIV condition. The “nowadays” implies that in the past it was not an easy task breaking the HIV news to her children. However, she found strength in “picking up her pieces” by continuously talking about her HIV condition to her family until she finally won the battle.
Having heard insights regarding picking up the pieces from the family’s perspective, it now becomes necessary to look at this metaphor from a personal perspective- how the participants themselves reacted to a lifetime treatment – its intake, reaction/effects of treatment on each individual and how each one coped with the treatment.
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living implies taking action to own the illness and to do something about it; that is, taking and adhering to ARV treatment. Now let us hear what the participants had to say about their lives with HIV treatment.
Surviving with HIV treatment: Criterion for initiation into HIV treatment
Initiation into antiretroviral therapy (ART) is a critical step within the HIV positive continuum.
Its aim is to sustain the health of HIV positive patients. Enrolling in ART takes a lot of effort and commitment to embark on a lifelong treatment intake. I consider this as part of picking up the pieces of transforming the HIV infection from deadly to chronic and a demonstration of responsibility for one’s health.
Initiation into ART was mostly prompted by a fall of the CD4 cell count to below 250 mml for these women (since most of them were initiated around 2004/2005). Twelve of them, with the exception of Portia, were on HIV treatment at the time of the study. They were all on first line regimen (which I describe below). At the time of the study Portia was in the process of ART initiation.
First line regime
The standard first line regimen for adults comprises Stavudine (d4T) Tenofovir, (TDF), Lamivudine (3TC), Nevirapine (NVP), Zidovudine (AZT) and Evafirenz (EFV). Stavudine was however, discontinued in many countries from 2009 due to its consistent toxicity levels. The participants have all remained on the first line regimen due to their consistency and adherence to the treatment requirements. The commitment and consistency that the participants show, reflect their eagerness to lead healthy lives- an indication of picking up the pieces of their lives and moving on.
159 Participants’ initial reactions to treatment
Side effects of the treatment
Some of the side effects of treatment under this regimen include uneven body fat distribution (lipodystrophy), diarrhea, nausea, vomiting, anemia, rash, fatigue, peripheral neuropathy and metabolic disturbances. To mitigate some of the side effects, the most common drug, Stavudine – known for most of these side effects - was recommended to be phased out by the World Health Organization (Duber,Dansereau, Masters, et al., 2015).
It is worth noting that at the time of the participants’ initiation into ART, the recommendation to phase out d4T had long been made but given the poor resource settings for Lesotho, health facilities were still giving the regimen to the patients. From its use, some participants (Thato and Tukane) experienced major side effects. Here is what they had to say:
I used to have a beautiful body, with curves, but ever since I took ARVs I began to notice changes in my body, with my feet and legs growing thinner, but my upper abdomen getting larger. In 2006 ARVs changed my looks. It was very painful seeing a good figured person changing into a huge big-tummied woman. I developed muscle wasting, I was wearing a towel and leggings inside to increase my hip line to hide my thinning out (Thato).
Tukane’s story regarding treatment side effects went like this:
I had just commenced treatment. Members of Phelisanang Bophelong support group did not want to associate with me. They feared that I was going to take their boyfriends….. I also felt good about my beautiful body. Look at me now! The use of d4T has transformed my figure to this unbalanced fat deposit. Now I am no longer their threat, because all that beauty is gone (Tukane).
Thabitha reported that her treatment regimen has negative side effects at first. These effects that the medication presented were not regarding physical appearance as was the case with the rest of the participants. Hers were that she could not swallow them with ease, due to their size.
…but I kept going on. I now have healthy children (Thabitha).
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Palesa developed ringworm, and people were beginning to notice abnormal skin lesions that were showing. The disfiguration of their bodies did not, however, stop them from continuing with their treatment regimen.
Mitigating the side effects of the treatment
In essence, the participants did nothing to mitigate the effects of treatment. It was only until recently, when the participants learned of the policy to change the drug (d4T), to another regimen that they wore brave faces and confronted health centres about their treatment.
Here is what Thato had to say about her treatment change:
….I then changed the regimen through “telling” the nurses to change the regimen. I actually told them the type of regimen that was suitable for me (Thato).
The concept of “telling” (ka ba joetsa – in Sesotho) which denotes: “take it or leave, it!”, “I demand that action should be taken to correct this”. These words come out strongly in Thato’s statement. This not only denotes some level of knowledge on the subject but also an instruction for concerned people to take action. Additionally, it demonstrates the confidence in using this knowledge to change one’s treatment situation. This is especially striking considering the typical nurse-patient relationship, with nurse as expert and agent, and patient as passive recipient. It further demonstrates the bold step of picking up the pieces of her life in an effort to stay in good health.
Queen, on the other hand, did not experience any side effects with the treatment but switched from d4T to another regimen given the global decision to switch patients from one particular drug to the other.
Comparing these reactions with what Musheke, Bond, and Merten, (2012) discovered, HIV infected people opt for herbal therapies instead of taking HIV treatment. These herbal therapies
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are believed to treat opportunistic infections and are purported to promote or improve appetite levels. These therapies or herbs comprise garlic, ginger and aloe vera. Other options that HIV infected people resort to are faith healing therapies such as prayer, anointing water and anointing oil. All of these therapies they emphasise, “put HIV infected people at the risk of early AIDS- related deaths” (Musheke et al., 2012, p.12).
Linking this observation with what the data reveal, it is worth mentioning that none of the 12 participants put on treatment (with the exception of Portia), resorted to self-care practices.
Perhaps it could be due in part to the fact that their low economic status would not allow them access to those therapies or that, given their lower educational level, such therapies never existed within their knowledge realm. It might also mean that they did not wish to disclose such practices (given my positionality in the study as outlined in the Methodology Chapter).
Their adherence to HIV treatment guidelines as prescribed by the medical practitioners reflects their level of commitment to regaining their health, thus picking up the pieces of their lives and from viewing their disfigured bodies negatively, to accepting this as their new normal.
Responding to a question on how free the participants were when taking their medication in public, the participants gave varying responses. Some participants (Tukane and Palesa) mentioned that they were initially reluctant to take their medication in the public eye but with time they opened up. Their responses were:
When I take my medication and someone asks me, I always tell them that I was once sick and later on I went to test, this is the medication that I take to mitigate my sickness (Tukane).
Palesa’s statement read as follows:
I used to have a challenge taking medication in public because there used to be a lot of people saying, “You will see those that swallow drugs, you will notice them (Palesa).
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These statements suggest that these women were initially not comfortable taking their ART in public. While Tukane did acknowledge that she told people that she takes this medication following her test, she did not explicitly say which test she took. This could indicate that, while she might have already been aware that people were suspicious of her regular drugs intake, she seemed to be not ready to open up to them.
Thabitha and Palesa seemed to be worried or shy about what people would say if they publicly took their medication. They might have perceived stigma and discrimination as a threat given their reluctance to take their medication publicly at the initial stage.
Thabitha’s side of the story went like this:
When I first started to use this treatment I was annoyed by the fact that I needed to bring a buddy to help me with treatment….I did not know who to bring because I do not have a mother. What I did was to keep asking the nurses why I could not be given treatment without a partner….It was around 2005. It was still a confidential issue. I was not ready to tell anyone (Thabitha).
Thabitha, with time, however, decided to gather strength to “pick up her pieces”. She went to the person who encouraged her to test. Note her statement when she eventually gathered her strength to confront her treatment requirements. She said the following:
Hey you! This “thing” that you said I should test for, now requires me to bring a partner (Thabitha).
This statement denotes a gradual change of mind from being afraid to access treatment, to some level of readiness to regain her health back.
Likewise, Palesa’s change of mind about treatment perception helped her to openly disclose that she was taking treatment – an indication of picking up her pieces and moving on. Palesa now
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began to perceive her HIV positive condition through a different lens – she started to accept or own her condition. Now she says:
…but with time I developed a coping strategy – that of assuring myself that I would be a fool to let myself die when I could avoid it (Palesa).
Her change of mind-set enabled her to face the realities of living with HIV and taking lifetime treatment to mitigate the further spread of the infection in her body. This reaction blends well within the transformative learning theory in which HIV diagnosis is perceived as a disorienting dilemma, and disclosure as new meaning perspective (I demonstrate this relationship in-depth in Chapter Seven). This change denotes a step of truly “picking up one’s pieces” and moving on, thereby developing a sense of personal agency. Her statement of “…I would be a fool.” is analysed within the context of Palesa challenging that the stigma and discrimination she may endure would not be allowed to stand in the way of her regaining good health.
Other perspectives regarding HIV treatment in-take
Maliketso, Queen, Thato, Joyce, Thandiwe and Puleng all mentioned that they never had any challenges taking their HIV treatment.
Here are some of the statements they made regarding treatment:
When I was told that my CD4 cells count was very low and that I needed to go on treatment, I brought my neighbour who acted as my treatment buddy to attend with me treatment sessions. Then I took the medication and continued with it without any problems (Maliketso).
Queen actually enjoyed taking her ARVs openly in public places.
I always take my treatment everywhere I am, in public places, in taxis etcetera (Queen).
Perhaps Queen does this as another way of educating communities about HIV, in that taking lifetime treatment is possible, or it could be seen as a way of reinforcing the strict instructions that come with treatment.
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Thandiwe, too, has no problem taking her medication openly. While most of the time she kept her medication at home, every time her treatment supporter reminded her to take it, she would comply. This indicates her openness with her treatment. In fact, Thandiwe confirms that even if she were to be asked by anybody if she took ARVs or not, she would boldly say “yes”.
Having discussed picking up the pieces of one’s life in relation to personal health, the next section discusses breaking the silence around HIV and AIDS and coming out into the open and reconnecting with the society, joining support groups and then moving forward from isolation and alienation, to belonging.