The Toxicity of Disease Categories & The Politics of Diagnosis

Disease categories exist within the field of medicine. The formation of categories place patients into tightly-labeled, assumption-riddled boxes. The categorization of disease, and as a result of patients, in many instances, disrupts quality of care and medical efficiency. It is important to recognize the history and historicity of disease categories, and the social factors that influence perceptions of disease and illness; it is in recognition of this history that more holistic and realistic definitions of a disease can be formulated.

Charles Rosenberg focuses on the act of, and text surrounding, diagnosis. Within a diagnosis is immense social power. A diagnosis labels, defines, and predicts and it helps to “constitute and legitimate the reality that it discerns” (Rosenberg, 2002). In arguing that “the act of diagnosis structured practice, conferred social approval on particular sickness roles, and legitimated bureaucratic relationships,” Rosenberg illustrates the critical nature of non-medical components of medical diagnosis (Rosenberg, 2002). Indeed, for Rosenberg, “the system of disease categories and diagnosis is both a metaphor for our society and a microcosm of it” (Rosenberg, 2002). Diagnosis defines individual lives not only from a medical standpoint, but from a social one as well.

This categorical system links knowledge and practice and objectifies the patient. However, this knowledge and practice, as Rosenberg argues, is widely generalized, and the physician, therefore, is “constrained by the very circumstantiality of that generalized knowledge and by the tightness of diagnostic and treatment guidelines” (Rosenberg, 2010). These categories result in a disconnect between the individual and the generalized disease picture.

There is also the impact of a diagnosis on an individual’s identity to consider. In his work, Patterson describes a “cancer counterculture.” In the 1880s and 1890s the uncertainty of the field of medicine extended to the “cancer topic” which was riddled with controversy (Patterson, 1987). This controversy stemmed from differing opinions on causes for cancer, theories such as contagion theory, hereditarian theory, and beliefs that perhaps luxurious living or emotional/mental stress could lead to cancer reflected broad social concerns about general life (Patterson, 1987). Fear of cancer created the tendency to stigmatize the sick, which further discouraged people from seeking care. It was only when cancer began to be recognized as a more common cause of death that attitudes towards the illness shifted and campaigns to fight the “war against cancer” became more accepted.

Paula Treichler explores a similarly created culture in her discussion of AIDS. Treichler examines the social history surrounding HIV/AIDS. Like cancer, AIDS was, and continues to be, surrounded by misconceptions of what it “really” is. Initially considered an illness confined to homosexual populations, AIDS reflected the social stigma that had become homosexuality. This stigma is mirrored in the the language used in relation to discussing AIDS. Phrases like “Adam and Eve, not Adam and Steve” and even the first names for the virus itself (i.e. “Wrath of God Syndrome and “gay-related immunodeficiency”) came to define AIDS and these definitions continue to influence present day understandings. Moreover, the different names for the virus “offer a fragmented sense indeed of what this virus, or family of viruses, “really” is,” (Treichler, 1999). In addition to the various names for AIDS, the virus was portrayed as a 007 “spy” and “exotic.” The text encompassing AIDS is an example of the “tension between self and not-self “ that Treichler discusses (Treichler, 1999); society wanted to distance itself as much as possible from the disease. As Patterson discuses, cancer was similarly depicted as foreign or exotic. This division between “self and not-self” makes illnesses such as cancer and AIDS uncomfortable topics of discussion and creates a rift between presentations of diagnosis and patient experience. Specifically in the context of AIDS, this self versus not-self becomes important in understanding “the particular role of viruses and origin stories in AIDS” (Treichler,1999).  AIDS must, therefore, be understood “as both a material and a linguistic reality” in that from a linguistic perspective, AIDS has had a tremendous impact on gay identity and on homophobia (Treichler, 1999). Initially defined relative to sociological explanations, which raise questions about “the degree to which prejudice, fear, or ignorance of homosexuality may have affected public policy and research effort,” biomedical explanations for AIDS remain tied to sociocultural contexts.

Treichler argues that in reality there is no true definition for what AIDS “really” means. In order to make progress, the medical field as well as the broader context of American society, needs to acknowledge and then move past the virus’s prior history. This progress, hopefully, will help lead to “an official definition that will in turn constitute the policies, regulations, rules, and practices that will govern our behavior” (Treichler, 1999).

Diagnosis has become an impersonal and highly-structured bureaucratic institution. As a “social reality,” diagnosis additionally influences perceptions of illness and disease. Disease categories are emotionally charged and generalized; individual identity becomes lost within such structures. Illnesses like cancer and AIDS, were initially defined through sociological explanations or societal reasoning. The labels given to these two particular illnesses have greatly influenced not only how they are approached and studied, but also how those affected are treated. In many cases the negativity and assumptions assigned to cancer and AIDS deter patients from fully seeking care and in the case of AIDS heavily shaped text surrounding gay identity. Nowadays cancer is a broadly represented terminal illness; this has helped dissipate the shame and denial once associated with it. Unfortunately, HIV/AIDS has only recently become a topic of focus, many uncertainties, and therefore assumptions, remain. Despite recent improvements and greater understandings of cancer and AIDS, the historicity of the two continue to taint biomedical approaches. There is a certain toxicity within disease categories stemming from the politics of diagnosis on social structure and individual identity.

Published by historicallyburdenedconcepts

Bi-racial butterfly interested in bioethics, sociogenomics, impacts on understandings of inequities

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