4.3.3 Concealment from friends
As discussed in the literature review in Chapter 1, friends and family form an important social support network that can enhance the life quality of people living with diagnosed HIV. However, the present study findings indicate that the research
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participants rarely disclosed their condition to their friends, particularly those living in their countries of origin. The findings also indicate that most of their friends in the UK were individuals they had met at HIV support groups, thereby negating the need to either disclose or conceal HIV status.
Twelve of the 17 HIV-positive participants had not disclosed their status to friends, as illustrated below. A common reason given for such concealment was the perceived inclination of Africans to ‘gossip’ about HIV, thereby increasing the risk of unwanted exposure, as illustrated below.
Interviewer: And have you told anybody else apart from your parents?
Bill: No, no, no! Because most of the friends even if we meet, apart from the people whom I know, I tell them, you know, it is like this, like this. But they are those people who are like in my situation [HIV-positive]. But other people who I don’t know [unknown HIV status], I can’t disclose. Because we are different people. Because you can’t trust anybody. They will tell you, “Oh this one is like this like this, this one is like this like this” [they will gossip].
(Bill, 31 years old, HIV-positive for 7 years. Has partner, Rachel living with him in London, 37 years old, HIV-positive for 8 years. Bill an 18 months old son. The child is known to be HIV- negative)
As the literature review indicated, concealment from friends whose HIV status is unknown is a common choice for people living with the condition. As with disclosure, participants seemed to base decisions regarding concealment from friends on informal cost benefit analysis, as illustrated bellow.
Interviewer: And how do you think HIV has affected your life within your family with your husband, with your child?
Rachel: It has denied me freedom. [Laughs]
Interviewer: What kind of freedom?
Rachel: It has denied me freedom because, ah, sometimes you feel you want to go and visit people. And I am one person we like socialising, visiting or people coming to visit me. But I have to limit that, even if, like now, like here, I have one friend who wants to come and visit us. But we have to plan ourselves very well, before she comes. If it is medication, medicine cabinet we have maybe to lock it out or do something, because we don't want her to know.
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(Rachel, 37 years old, HIV-positive for 8 years. Has a partner, Bill living with her in London, 31 years old, HIV-positive for 7 years. Rachel has an 18 months old son. The child is known to be HIV- negative)
Rachel suggested that concealment of her condition from friends had curtailed her freedom and constrained her socialising. Rachel and her husband had to meticulously plan and manage any social encounters in order to try to avoid leakage of information regarding their HIV-positive status. However, Rachel accepted such restraints in order to obtain the benefits, as she saw them, of likely confidentiality.
Given that only a few participants had disclosed their condition to friends who were not HIV-positive, it was interesting to explore the factors influencing concealment.
The participant quoted below assessed the risks arising from disclosure on a case-by-case basis in order to decide whom to tell, and from whom they should conceal, their HIV-positive status.
Interviewer: And among your friends how do you manage to keep it to yourself?
Damien: My friends?
Interviewer: Hmm
Damien: You know … at times let’s say you can bring this conversation on the table [about HIV]. You can hear each and every person’s views. Or now you can judge that one is lacking information on HIV, you cannot [not disclose to them] oh this one, he is very ok [can disclose]. Yea, not all people they know because they don’t know how it is spread. If they see, let’s say, a leaflet with HIV, they just drop it. No need to read!
(Damien, 54 years old, HIV-positive for 7 years, has 4 children in country of origin from previous marriage. Previous partner died of AIDS related illness in country of origin. Has partner, Lorna who lives independently from him in London, 52 years old, HIV-positive for 11 years, has 2 children. Lorna’s 13 year old son who lives in London and Damien’s 10 year old son who lives in country of origin are known to be HIV-positive)
Damien described his strategy of vetting which of his friends he could risk confiding in and who he needed to conceal his diagnosis from. By initiating a generalised discussion about HIV, he was able to gauge his friends’ attitudes towards the condition and to assess their likely reactions to disclosure. He would avoid disclosing to people whose responses in a generalised conversation suggested that
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they were ignorant about HIV because they did not want to know about the condition.
Damien’s account of his decision-making strategy is particularly interesting because it suggests that he was trying to find a way round the ‘inductive prevention paradox’
(Heyman et al., 2013) that those who conceal their HIV-positive status from particular others cannot know for certain how they would react if they knew about it.
Some participants concealed their HIV-positive status because they were convinced that confidentiality would inevitably be compromised by others as a consequence of the propensity to gossip which they saw as an attribute of African culture.
Interviewer: Any reason if I may ask?
Melisa: Yea … once they know you have got HIV, you will be the story. When they are, like, in a place for drinking, all the story they will bring about [talk about] is about you. They will be saying, “Oh you know so and so, you know, she has HIV, she is going to die”. It will just be story … so that’s why I don't tell anybody. I just keep it by myself and my partner.
(Melisa, 43 years old, HIV-positive for 13 years, has adult daughter.
Separated from partner, Biden, 43 years old, HIV-positive for 11 years, has no child. Biden and Melisa still visit each other. Melisa’s 13 year old son is known to have died of AIDS related illness in the UK)
Melisa’s primary reason for concealment was to avoid stigmatization by friends and members of their social networks. For another informant, concealment from the wider world had become central to his way of coping with HIV.
Interviewer: Is there anything else you would like to say?
Trevor: No … It [HIV] is not a death sentence as it used to be. But it leads to a very, very painful time that someone that is not positive will never understand ... But the moment you get it, is when you realise the troubles and the pain of it … I look at my friends when they are laughing and jumping and playing, and I laugh when they are doing that. But they don't know what am going through, you see. They don't know what I am going through.
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Interviewer: And how do you feel when you reflect on that?
Trevor: Of course, at times … I say “Jesus, why, why did this have to be?”
But after some time you say, anyway, “It is done. What can I do? … Take your antivirals, and be yourself, look nice, look good, you don't have to tell everybody” … So, that is what it is.
(Trevor, 47 years old, HIV-positive for 3 years. Has a partner living with him in London, HIV-negative, not interviewed. Trevor has a 5 year old son, the son is known to be HIV-negative)
Although Trevor accepted the prevailing view that HIV is no longer a death sentence in developed countries, he considered that there was more to living with HIV than just taking medication. He had opted to manage information about his condition through widespread concealment. The price he paid for adopting such a strategy was that he had to maintain a false persona and live with a fissure between what he was experiencing and the image of himself that he presented to others.
4.4 Summary
This chapter provides an analysis of concealment of HIV-positive status as an option used by many of the present research participants. Whereas a few of the HIV-positive participants opted to reveal their condition widely, a majority selectively concealed their HIV status from some of their family members and friends. These individuals weighed the potential consequences of disclosure and concealment of their status. Those who opted for concealment seemingly attached more value to confidentiality and control over the flow of information, than to the potential benefits of disclosure, such as access to social support. As documented in the overview to the three findings chapters, more men than women concealed their condition from at least some others, particularly children. It was also shown that HIV-positive individuals were more likely to conceal their condition from male than female family members.
Concealment of HIV-positive status as a communication strategy served multiple functions for those who adopted it with selected others. It was meant to exclude from the HIV-status-information loop those who could not be trusted to maintain
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confidentiality; to protect those perceived to be too vulnerable to handle the shocking news; and to exclude those who were unlikely to provide social support.
Concealment from parents and children was intended to protect them from perceived risks such as stress and stigmatization. Some participants felt that their parents were too old to deal with the news of HIV diagnosis, and that children were too young to comprehend what it means to be HIV-positive. Children could also be viewed as a potential source of exposure to others. Physical separation facilitated concealment from friends and family in Africa, as did the invisibility of the disease with respect to concealment from others in the UK. The 17 HIV-positive participants were able to effectively conceal their HIV status until they perceived a need to reveal it or until it was exposed, which is the topic of the next chapter.
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