With such wide-ranging CD4 counts, the members of this sample took different stances on what constituted normality. Satisfaction with one's own CD4 status was positively associated with CD4 counts; higher levels of CD4 counts led to greater satisfaction (r = 0.37, p < .01) (Table 2). Yet, surprisingly, the CD4 count had a weak relationship with ‘self-assessed immunity’ (r =−0.19, p > 0.05), ‘worry about immunity’ (r =−0.08, p > 0.05), and ‘perceived ease of maintaining immunity’ (r =−0.03, p > 0.05). The same pattern is found when the CD4 counts are classified into three categories (see Table 2). The findings suggest a complicated psychological reaction to the CD4 counts, and the results are illuminated by qualitative data presented below.
The preoccupied: Eleven respondents expressed tremendous concern over their immune condition and CD4 counts. Overwhelmingly gripped by the idea of CD4 counts, their inverse relationship to viral load, and the apparent health implications, these preoccupied HIV sufferers have demonstrated unremitting attentiveness to virtually any changes in bodily state, in their physical condition, and in the ups-and-downs of CD4 counts and viral load. They associated dreadful consequences with reduced immunity and its associated maladies, such as opportunistic infections, developing drug resistance, and hospitalisation. Even more threatening was the possibility of unemployment and incapability to play critical social roles, hence becoming socially disabled people.
Most of their CD4-induced tension came from past experiences with HIV infection, which were distressing enough to cause prolonged anxiety and distress:
My CD4 was zero when I was hospitalised as a full-blown AIDS patient. That was a horrible experience to me and I have been keeping watch on my CD4 count from then on (053).
With CD4 counts well below average, they reported vulnerabilities such as ‘always feeling dizzy, nearly fainting’, ‘weakness and much less energetic’, and ‘. . . having TB and easily catching a cold’. Noticeably, these preoccupied HIV sufferers had CD4 counts ranging from 100 to 811, with an average of 311, and among them, six had a count greater than 300. This average was almost 100 lower than that of the entire sample (mean = 406), but still represents a tolerable condition according to the current clinical standard.
Compared with other participants, the ‘preoccupied’ patients were much less educated (college graduates: preoccupied = 9.1%, others = 33.7%) and had a longer duration of HIV positivity (mean of the preoccupied = 6.50 years; others = 4.72 years). As a result, only 27.3 per cent of the preoccupied had a full-time job, and 45.5 per cent were unemployed. The proportions for their non-preoccupied counterparts were 41.3 per cent and 34.8 per cent, respectively. In summary, the preoccupied group was at a greater disadvantage physically, economically, and psychologically.
The pragmatic: A pragmatic stance, as displayed by the majority of respondents, involved recognition of the possible implications and impact of CD4 count without dwelling excessively on negative aspects of this, and also a degree of personal idiosyncracy. Regardless of the extent to which such people were concerned over their immunity, they strongly contested the orthodox ideas surrounding CD4 counts. They questioned excessive reliance on counts alone and were sceptical about critical cut-off points, such as the view that a CD4 count of 200 indicates that recovery of health is a lost cause. Instead, they emphasised a holistic view of immunity, and identified an acceptable range for CD4 counts that pertained to their own situations.
How well one is doing and how good one is feeling did not necessarily correlate with CD4 counts. Rather, wellbeing was assessed and perceived subjectively. Virtually all the pragmatist respondents shaped their CD4 viewpoints by empirically and holistically observing the illness trajectories of their HIV peers, against which they considered their own conditions acceptable. ‘Living a normal life’, ‘having a job’, and ‘being energetic’, all justified a normal state of physical health and satisfactory immunity, regardless of CD4 counts. Indeed, to the respondents, the body itself embodied an internal state of immunity, which was visible and perceivable.
CD4 counts as well as viral load were not always trustworthy because most of the respondents believed themselves to be frequently surrounded by, or that they themselves were, ‘exceptions’. That is, illness trajectories or disease progression reflected neither common sense nor official views of the meaning of the CD4 count. Many were either ‘having a CD4 count less than 10 but still doing well and looking great’ or ‘having a CD4 count of many hundreds but still easily catching a cold and looking pale and frail’. These observed deviations, be they positive exceptions (low in CD4 counts but doing well) or negative ones (high in CD4 counts but in poor condition), provoked a great deal of thought and attempted explanation. The following is an interesting case, not only emphasising the idiosyncratic nature of interpretations of CD4 cells but also vividly expressing an image of them:
My CD4 count is low; only 110. But they [CD4 cells] are much stronger – each CD4 exerts a power 100 times greater than that of other persons. I never get sick and have been in good condition in the past three years (059).
The vigour and animation of his CD4 cells, according to his emphasis, has added an additional attribute to a CD4 cell; besides quantity and volume, the quality of CD4 cells is felt to vary among different individuals.
CD4 as conceptualised by HIV-positive persons, therefore, involves a perception of the idiosyncrasy of this micro-component of the body in each individual. To make sense of all the observed exceptions, ideas about personal constitution, as discussed previously, became a dominant source of ideas. Statements like ‘ideal and achievable CD4 levels vary among persons’ and ‘it [what constitutes a normal range of CD4 cells] is inborn’ typify this idiosyncratic thinking.
The idiosyncrasy with which CD4 counts were judged acceptable was used to justify the appropriateness of a specific quantity. For example, this participant stressed the importance of adequacy:
. . . [the number of] 170 is low. But it is enough for me. Besides, my health condition is OK (038).
Stability is another concept, highlighted mainly by the patients of Dr Hsu (a pseudo last name), who has a twelve-year experience in HIV/AIDS clinical care. According to these participants, Dr Hsu assured them that CD4 counts per se were not as critical as maintaining a certain level. As long as the count remained stable, even when lower than the expected minimal normal range (for example, 200–300), one's physical condition could be good.
More philosophically, moderation and equilibrium, both being core concepts of the Chinese worldview, were also used to help cope with less satisfactory CD4 conditions.
. . . but not to be too high . . . . better to maintain a stable range. Everyone should pursue equilibrium. Too high is dangerous. Just like nature. It has to maintain equilibrium, otherwise, all would get out of control. Don't push it [CD4 level] forcefully. It will achieve equilibrium itself (082).
An uphill [rising CD4] level might cause retaliation (094).
Failing to maintain CD4 levels in a state of moderation and equilibrium, the harmony within the whole microcosm of the body might collapse. An acceptable quantity and quality of CD4 cells, therefore, is no longer based only on absolute criteria but rather on subjectively prescribed frames of reference, which were shaped by a cultural worldview and health beliefs, continuously negotiating with, if not totally rebelling against, biomedical reductionism.