The Burdens and Understandings of Illness and Care: A Multi-Voice Narrative

I know it is perhaps strange so much of this blog centers on medicine, but I find that gaining and understanding of clinical ethics or medical anthropology (in which I completed my undergraduate degree), gives a solid foundation for my current work. Genetics research overlaps with biomedicine. Behavior genetics may one day become medicalized in relation to learning disabilities (more realistic) or more frighteningly things like intelligence or athleticism.

With that said, the theme for this week is globalization, a word which encompasses many meanings. For example, there is globalization as a more general definition; the exchange of cultural, political, social, and economic practices and technology. With regard to illness, and in particular HIV/AIDS, the focus for this week is the globalization of healthcare. That is, the dissemination of information regarding illness and care practices and how different societies deal with the same illness. Felicity Thomas’s piece titled “Stigma, Fatigue and Social Breakdown: Exploring the Impacts of HIV/AIDS on Patient and Carer Well-Being in the Caprivi Region, Namibia,” not only serves as a testament to the central role those who provide care to the terminally ill play in terms of patient well-being, but also highlights the strain such a burden can have on those caring for one who, despite all efforts, will eventually fall to the talons of death. Likewise, Hanne Mogensen’s work  “The Narrative of AIDS among the Tonga of Zambia,” explores the impact societal rules and values have on the articulation of illness.

An illness is as much defined by the social perceptions surrounding it as its very biological nature. Illnesses like HIV/AIDS, which carry great social stigma make acceptance of the disease and courses of treatment difficult to comfortably discuss. Indeed, prognosis, diagnosis, and subsequent care fall victim to the judging eye of a world wrought with misunderstanding. In Zambia, AIDS is closely associated with a “traditional” disease known as kahungo. Mogensen emphasizes that such a tie is the result of narrative logic which sheds light on the local point of view on AIDS. In Mogensen’s eyes “the narrative of AIDS and kahungo is not just told, it is also lived” (Mogensen, 1997). This statement is important and should be taken into consideration when thinking of medical education and healthcare. In a previous post I’ve discussed how large pharmaceutical companies were able to commandeer  the medical education field and weave their own narrative to further their corporate and financial goals. Narrative, therefore is critical in the presentation of illness and relative care options. In terms of AIDS education in Zambia, these local narratives must be taken into consideration if treatment options are to be legitimate and effective. A misunderstanding can easily arise if there is a disconnect between local narratives and outside groups who’s aim is to provide medical education. also lived

This misunderstanding then shapes the ways in which a patient responds to a diagnosis, prognosis, or healthcare options. The burden of care is one which affects an entire community, especially in this region of Namibia where HIV prevalence rates have reached up to 43%. For Thomas, “localized and participatory approaches [are] necessary to promote the involvement of other household and community members in contributing to caring duties, actions which… have significant potential to decrease the burdens of care and alleviate subsequent intra-household tensions.” Thomas stresses that a “household’s ability to cope with the impacts of long-term illness and interlinked shocks and stresses is influenced by the availability of social support provided through inter-household relationships” (Thomas, 2006). As inherently social beings, humans rely on relationships for the most fundamental elements of survival, and as Thomas points out “social relations are lived and experienced through emotions” (Thomas, 2006). In situations of illness, human dependency on others only further increases. This poses a particular problem in the Caprivi Region of Namibia that Thomas studies. The “see for yourself” mentality makes situations of dependency psychologically taxing on the patient and the carer. One patient expressed this discomfort in the following “a person who eats cannot just sit, she has to work very hard” (Thomas, 2006). This sentiment is further disrupted by periods of remission and regression and because of the long-term nature of an illness like HIV/AIDS. Remission and then regression foster social ideas of laziness and idleness on the part of the patient. Laziness and idleness are unacceptable and the social narratives told around the “see for yourself” mentality propel these ideas forward. As Mogensen would argue, such narratives must be paired with medical education. In the Caprivi region, a world that values self-sufficiency, the intricate bond established between the carer and the patient is almost seen as parasitic. The patient takes at the expense of all who have put in the effort to provide them with care. When remission occurs, a mist of doubt encircles the legitimacy of illness, as the patient is able to partake in activities that before they were “too sick” to do.

This doubt further encourages the kinds of stigma Thomas discusses. These include self stigma (self blame and self-deprecation), perceived stigma (fear people have about being stigmatized if they reveal their HIV status), and enacted stigma (acted upon discrimination/stigma). Self stigma and enacted stigma are especially prevalent in Thomas’s piece. With regard to self stigma, while “caring, which generates hope and support for an ill person, can impact positively upon the well-being of the patient, providing them with a sense of self-worth, dignity, and belonging,” the frustration, strain, and isolation that gradually builds throughout the years of care affects the psychological well-being of the carer and thus extends to the patient who feels at fault (Thomas, 2006). As Mogensen points out, “blame has played an important and often destructive role in the social response to AIDS, as it has in the social response to earlier epidemics” (Mogensen, 1997). Interestingly, “while this acceptance of self-blame can perpetuate the suffering of the ill person, it also provides a form of relief and optimism” in that the patient is in some way “seeing for themselves” by  taking on this form of responsibility (Thomas, 2006). Too, self-blame represents a kind of narrative. Mogensen writes, “narratives are interpretive devices which give meaning to the present in terms of location in an ordered syntagmatic sequence–they enable us to see that present as part of a set of relationships involving a constituted past and an anticipated future” (Mogensen, 1997). If this definition is to be applied to Thomas’s piece, self-blame in as a form of “see for yourself” in a narrative structure is used to make sense of a situation and a disease.

The link between AIDS and kahungo in Zambia, as a way to make sense of a relatively “new disease,” “is a sign that previous AIDS eduction has had some effect” (Mogensen, 1997). What this means, is that “the two main messages of AIDS eduction: (1) sexual modesty and (2) caring for the patients, are both included in the narrative about kahungo,” an illness that is more well-known and thought to be better understood (Mogensen, 1997). Mogensen, therefore, believes that “what kahungo teaches us first of all is that people actively and dynamically engage in the process of creating an understanding of AIDS” (Mogensen, 1997). In Namibia, misunderstandings mold a definition of AIDS that affects the patient. In Zambia, the newness of AIDS makes its medical education likewise unfamiliar; kahungo serves as a way to bridge this gap. It is important to recognize, that definitions of such an illness vary depending on the culture within which it is discussed, but the role of narrative plays a common role. Mogensen’s piece made me think that social perceptions and stigma are, in their own way, a kind of narrative. Stigma is alienating and isolating, in doing so it attempts to make a group of individuals the “other,” or “different,” thereby seeking to establish a structure to the nature of an illness. In many ways it echoes Mary Douglas’s Purity and Danger, a work that Mogensen refers to, and which I had the pleasure of reading in my first Anthropology course at Stanford. Stigma is an indicator of danger, it is the antithesis of purity, and illnesses like HIV/AIDS are very much regarded as impure.

In order for the exchange of ideas, practices, and other forms of education to be lasting and effective cultural narratives must likewise be shared and understood. With regard to medical education, Mogensen reiterates the role of narrative structure, one which cannot be ignored. Illness is an emotionally, economically, and socially taxing event. It is a phenomenon that disrupts the natural order; it is perceived to be dangerous and impure. While attention is given to the burden faced by the ill, attention must also be given to those who provide care; all narratives are important when understanding illness.

 

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