Perceived Sense of restored/enhanced Self

Participants who demonstrated a restored or enhanced sense of self had experienced a marked improvement in their lives because they no longer had problems with recurring sickness, were

124 able to perform their daily chores normally and could be able to work harder than those who they considered well (HIV negative). The fact that they were living in peace with themselves and had little stress was also considered valuable. A female participant whose story epitomizes this perspective had this to say:

The situation is just as it was in the past. I currently even live better because the problem of falling sick I no longer have. That after every short while, someone is coughing, after a short while—for me it is feeling fatigued that I used to feel fatigued that I could not work the way I used to work in the past. I [currently] do my chores as usual. I just perform my chores. I am even better because…now I work more and my farm does not lie fallow. I get bountiful harvests—I still have the harvest of the past year in my house in a sack. So I find that myself I am glad because if a disease overwhelms you in the house, there is nothing you can do. So I see that I am living well. I am well (R12: 31-year-old married woman, 51).

The participant expresses a renewed sense of vitality and vigour that makes her even surpass her previous output in terms of harvest and gives evidence in the fact that she still has surplus grain from the previous year’s harvest.

The ability to perform one’s daily tasks and fulfil social obligations successfully was indeed a powerful component of a restored sense of self because it enhanced a person’s capacity for independence. A widower aged ≥46 years supports this view when he comments that:

You know the moment you are not able to perform your duties, you will be a beggar and a person whom others are tired of. The goodness is that you are able to perform your duties, you do not become a beggar and you do not become a parasite. So, a parasite means someone who depends on…on others. So I am not a parasite. I do my things so knowing my status has helped me because now I can do my own things so it has helped me a lot, a lot (R31, widower, aged ≥46 years, 51-56).

The above case illustrates one of the obvious benefits of knowing one’s HIV status and being enrolled into care. For the widower (R31), knowing his HIV status has enabled him to recover his perception of self which seems to be intertwined with his ability to be self-reliant as opposed to being dependent upon on others (R31, widower aged ≥46 years, 51-56). Enhanced and restored sense of self due to ability to be self-reliant made possible by better health is further reinforced by a 48-year-old married man who quipped that:

In fact, currently, I can say that I have a more elevated sense of self. Because the things, that is the joy that I have is that I can maneuver my ways. My things I can perform with joy. That is, independently (R36, 61-63).

125 Apart from strength in the body and ability to perform daily chores, the appearance of the body was also a key factor in defining restored sense of self. Some participants not only considered their bodies as smart looking, but also rejoiced in the fact that they had gained weight and regained a well-built physique. A typical case in point is a married female participant aged 36-45 years. She remarked that:

I am very smart, I am very beautiful, [and] people admire me. Nobody can know that I am living with HIV, compared to the days when I was living without knowing my status. At that time I had stress, I had lost weight, and so on. But after knowing my status, my life changed because I know how to live with HIV, I know how to eat, I know how to get money. My life has changed. Even the photos I had before are different from the photos now. So I am living a good life with HIV before the life with HIV (R47: married woman, aged 36-45 years, 53).

The fact that they had bodies that were presentable and admirable and which disguised the possibility of their status being made public was a source of satisfaction that enabled these participants to express an enhanced sense of self. In contrast, those who could no longer gain weight and have smart bodies perceived a disrupted sense of self as has been seen previously.

Ability to resume active participation in social life and engage meaningfully in daily events was considered a valuable aspect of self whose recovery had been made possible by enrolment into care. A 44-year-old widow had this to say:

When I survey myself in the past, my status in the past that even perhaps people were going for some journey somewhere. I would not personally go because I was unwell. But currently, anytime you can call me, I will just pick my bag, as long as there is money. And even if it found when I was well, but where people are, I would always just be to myself. You know when you have lost weight, your body is also paining and you are weighed down with worries.

But this case you are healthy, even though you may not be heavily built like myself (R38, 31).

The acquisition of new and valued social roles or status, such as that of ‘health consultants’, was hailed as a benefit of knowing one’s status. It was often the case that other families who had a member suspected of having HIV-like symptoms would approach someone known to be living positively with HIV for advice. A 51-year-old separated female participant put it nicely when she said that:

The change is great, because currently in the village, you can find that someone approaches you to ask you about something. Even if the person has some problem, you could just find that they just stop you. Even where we are taking care, sometimes there is someone who knows you but you do not know them. You could just find them stopping that “please let me talk to

126 you. I am also there.” And I am normally very free to talk to them. And I am also free to inform them that “me whom you see talking to you, do not think that I am not like you” (R46:

51-year-old separated woman, 46).

The participants in the study who were thus considered as ‘health consultants’ felt that they were valuable and that they still had something useful to contribute to society.

Ability to acquire new things, qualities, characters traits and perceptions of self that one did not have in the past were features of a renewed sense of self resulting from knowing ones HIV status and deciding to live positively. One female participant who had acquired a new perception of herself quipped that “I started to appreciate myself. In the past, I came to a point when I really despised myself and resolved that it would be better if I died. (Laughter). But later, I came and loved myself” (R34: married woman, aged 18-25 years, 51-53). Another man had this to say: “Well, I can say that I respect myself more than before because I want to live. So I must just adhere to the instructions I am being given so that I may live” (R44: 36-year-old married man, 79).

A 21-year-old married man who had acquired a new sense of life and who was able to accumulate property and achieve some material progress from the new experience said that,

“I have built, I have bought three livestock and my wife has also bought two animals. So even her when I informed her that I was HIV positive, I did not see her develop any fear” (R23: 21-year-old married man, 71-77). Some participants also considered life after knowing their status and enrolling into care and treatment as a new lease of life. It was as if someone was getting his life back again. One man remarked that “It is only that rising and walking again.

So you just be faithful to your wife. So you avoid wanton sexual relations” (R3: married man, aged 26-35 years, 77).