Receiving a positive HIV antibody test result generally is a prerequisite for adopting an identity that entails HIV. But a positive test is not sufficient cause to do so and it also is not always necessary. Some people may know they are HIV positive because of their symptoms and sometimes these, or having had a lover (or injecting partner) who also was HIV positive, provide proof enough. Medical confirmation of what they know to be true is not seen as necessary (Huby 1999; Lindenbaum and Lock 2003). Both authors have heard rumors about HIV-negative people who adopt (or seek to adopt) AIDS identities in order to gain health and welfare benefits, or pity, or entry into a study for which they will be paid incentive fees. Some are said to fake HIV positive status in order to terrify those who might otherwise exert power over them, such as police officers or sexual partners; others are said to do it to shame passers-by or even close relations into providing handouts. According to various estimates, about half of all US HIV positive individuals do not know they have been infected (Levi 1996). The US National AIDS Behavioral Survey found that more than 60 per cent of those at the highest risk for infection had not been tested for HIV antibodies (Cajetan, 2004). Many people at risk do not perceive themselves as such and so do not get tested. Barriers to HIV test are evident: results take anything from 24 hours to two weeks to be returned. The period between having one’s blood drawn and finding out if one is or is not HIV positive can be trying (Lindenbaum and Lock, 2003).
Many test-takers do not return to the test site to find out their results; some surveys indicate that only 60 per cent of those tested come back (Levi 1996). Those who do return often find the vocabulary that clinicians use to talk about the test confusing, which can lead to misinterpretations of results. For instance, one participant with hemophilia was told his result was “positive” and he at first interpreted this as meaning ‘good’ and that he was free from infection (Lindenbaum and Lock, 2003). Further, as Adam and Sears (2003) point out, people who think that they have ‘passed’ the HIV test sometimes equate their perceived negativity with immunity, and this can lead to an attitude of increase in risk behavior. If test results are positive, the person must adjust to his or her new status as a HIV positive. Most research on adjustment to positive test results concerns homo- or bisexual men who belong to relatively organized urban gay communities. Working with mostly homosexual men, McCain and Gramling (1992) identified three separate phases of HIV positive status or AIDS coping. These phases were (a) Living with Dying (b) Fighting the Sickness, and (c) Getting Worn Out. ‘Living with Dying’ begins with a positive diagnosis and the initial desire to deny it and the death that, sooner or later, it brings. The desire to deny is not limited to non-heterosexual men: for example, denial as well as related pathological behaviors, such as increased drug use, are especially likely among substance-using women (Lindenbaum and Lock, 2003).
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Denial is also more common among Black HIV-positive gay men (Levi, 1996). For some people, denial persists even as symptoms of AIDS develop. Intuitively, denial seems a counter-productive response. It is true that it may be correlated with higher levels of sexual risk taking. But, as Adam and Sears (2003) point out, “There is a growing appreciation for the role of denial or illusion in the maintenance of psychological functioning”; denial can contribute to “a robust sense of psychological well being” (p. 211). Those who engage in the strategy of denial may have lower emotional stress levels than those who do not deny the correctness of their diagnoses. Beyond the urge to deny, ‘Living with Dying’ also entails “anger, depression, suicidal ideation, and fear of rejection by others” (McCain and Gramling 1992, p. 276). Sleep and communication disorders, increased anxiety, and hypochondria also have been observed. Women who test positive may feel overcome by guilt about their possible roles as transmitters of HIV to their children. They are also probably as likely as closeted or self-loathing homosexual men to “experience feelings of overwhelming shame” as a result of their HIV positive status (Qtd in Adam and Sears, 2003, p. 45). It may be taken to signal their participation in socially unacceptable practices (e.g. illicit drug use, multiple casual sexual relations, a relationship with a man who is unfaithful). Whether female or male, HIV positive individuals who feel stigmatized may also feel unable to inform members of their social networks of their condition. This can lead to “increased isolation during a time of great need” (Qtd in Adam and Sears, 2003, p. 47). Moving from the anger and fear of the first phase of coping into the next, ‘Fighting the Sickness’, involves making the decision to, as McCain and Gramling say, “get on with one’s life” (1992, p. 278). Social network membership shifts as rejecting individuals drop out, as those deemed somehow threatening (e.g. as hateful, accusing, or merely unsupportive) are avoided, and as more HIV-positive individuals are incorporated. Such incorporation, of course, depends on the extent to which one identifies with other HIV positive individuals in his or her area. While urban gay men may have no problem seeking membership in their networks, people in rural areas may not know other HIV positive individuals with whom they might socialize. Furthermore, a homophobic heterosexual may not wish to associate with other HIV positive individuals if most are gay. Yet, people ‘Fighting the Sickness’ focus not just on locating and cultivating friendships with supportive people. They also have concrete physical goals such as getting enough rest and eating well (Cajetan, 2004). While ‘Fighting the Sickness’ often involves purposeful health-seeking behavior, financial and other needs may prevent this, as might gender expectations. For example, poorer HIV positive women who would like to nurture themselves often cannot because of material and social obstacles such as money shortages, familial responsibilities, sexism, and racism built into the health care delivery system (Levi, 1996).
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