The Issue of Tuberculosis-Related Stigma - Essay Example

Tuberculosis-related stigma and social suffering using theories of embodiment and from a political economic perspective Introduction: Tuberculosis is a contagious disease that infects up to one-third of the world’s population ((1). The consequences of this reservoir of infected people is eight million new cases of tuberculosis and two million deaths every year, making tuberculosis one of the major causes of illness and death around the world and in particular the developing world. (2). Despite such alarming proportions to the disease, the social stigma and its impact on social suffering has not been studied to adequate levels, when we take into comparison other later infectious diseases like Human immunodeficiency virus (HIV), or conditions like mental problems. Studies into social stigma and the social suffering of tuberculosis needs to be given sufficient importance, as they have significant implications on the affected person’s well being and also into controlling the spread of the disease, which has now demonstrated epidemic-like qualities. (3). Maybe this indifference to proper studies on the social stigma, as a result of tuberculosis and the social suffering it causes, may be due to the fact that it is often referred to as a ‘disease of poverty,’ which by implication encourages the poor to be blamed for the spread of infection, as though poverty was a life choice people made willingly and this attitude is reflected by those in political power and societies by and large around the world. (4). In some sectors of developed countries and in many developing countries, the diagnosis of tuberculosis is often closely associated with stigma and subsequently, social suffering. This is the cumulative effect of many factors including a common misconception that tuberculosis sufferers are responsible for their condition. There is less awareness in the community about how prevalent tuberculosis related stigma is in comparison for example to Human immunodeficiency virus (HIV). This discrepancy is largely due to the knowledge that tuberculosis is treatable. This paper aims to study the impact of political-economic structures and processes on tuberculosis-related stigma and social suffering with an explicit orientation around the ‘paradigm of embodiment as a means of understanding the lived experience, social and personal meaning of the body and the political economy of the body’. (5) Focusing from a political economic perspective alone on the issue of tuberculosis-related stigma would have produced a ‘disembodied body’, (6), as this approach would have largely neglected the concrete and specific social suffering of tuberculosis sufferers and more importantly, the complex consequences of that suffering not only to the individual, but also on the larger social community that tuberculosis sufferers are a part of. Embodiment of Tuberculosis-related Stigma: Embodiment in medical anthropology is specifically concerned with the lived experience of one’s own body, specifically the way that ‘individuals negotiate their everyday lives via the utility of their bodies, and how they mediate, interpret, and interact with their physical and social environments’. (7). Embodiment of tuberculosis-related stigma and social suffering is embedded within specific societal, cultural, historical and political contexts, with these experiences being strongly influenced by socio-economic class, gender and ethnicity. This paper will discuss the three distinct yet interconnected levels of analysis of the embodiment of tuberculosis related stigma and social suffering, to encourage an understanding of the multiple layers of tuberculosis and health. The first level or the individual body provides an alternative to the Cartesian mind-body dualism theory and is understood in terms of the lived experience of one’s own body. The second level is that of the social body which encompasses the way in which the individual body is used symbolically and metaphorically to conceptualise and represent culture, society and nature. The third level of the political body refers to the ways in which the body is controlled and regulated within society. The stability of this body ‘rests on its ability to regulate populations and to discipline individual bodies’. (5). Stigma and social suffering in this framework is a form of individual level expression of social contradictions and social truths or a type of communication amongst the three levels. Therefore, in order to effectively eradicate the individual expression of social suffering, the role of social, political and economic factors in generating tuberculosis-related stigma must also be considered. First Level of the Embodiment of Tuberculosis-related Stigma: Stigma refers to the ‘attachment of negative value to an individual because of a deviation from culturally defined normality. (1). On the first or individual body level, we attempt to understand tuberculosis related stigma in terms of the individual level of patient experience, under the assumption that the ‘self’ is in charge of the body. In contrast, the second and third levels of social body and politic body where the body is taken away from the self. Lived experiences of being diagnosed with tuberculosis differed for patients in different societal, cultural and political contexts, but all experienced stigma related to their disease to varying degrees. Sufferers of this heavily stigmatised disease perceive themselves as ‘disease vectors’ and after their diagnosis; many felt that family and friends shunned them and as a result many sufferers responded by isolating themselves from others and becoming secretive about their condition. (8). Tuberculosis is considered by many sufferers as a ‘disembodying experience’ as patients feel betrayed by their body and seeks answers for they’re suffering not only at the hands of the disease but also from a social point of view. We will highlight the lived experiences of individuals from Peru, a developing country to further understand the complex consequences of tuberculosis-related stigma and social suffering. Peru is an example, which highlights the lived experience of tuberculosis sufferers in a developing country. Peru is one of the 22 countries that contribute to nearly 80% of global tuberculosis cases each year. (9). Tuberculosis related stigma in Peruvian patients also resulted in social suffering from multiple levels. At the individual, patients reported social isolation and a loss of sexual and fraternal relations. On the family level, there was often a change in living arrangement following diagnosis where the patient’s movement within the home is restricted as other members of the family unit do not want the disease to be ‘spread around’ or thrown out of the house entirely. For those that remain within the family home, special eating utensils for their use only. The cumulative effect of these influences are delays in tuberculosis diagnosis, as patients are unwilling to seek treatment and cure where they can be seen by other members of the community and follow on effect of delays in treatment and cure. In short, masking of the disease occurs leading to misconceptions of the extent of its prevalence and its costs in terms of mortality and morbidity to society. This is a contributory factor to the complacence that is witnessed with regard to tuberculosis, besides the belief that it is treatable. (10). Consequences of tuberculosis stigma are not only suffered by the individual alone, but also on community in the form of loss of a valuable economic resource as those ill are unable to work and endangering even their own health, as a minute number of patients develop multi-drug resistant tuberculosis from not completing the prescribed treatment, due to the stigma of being seen as a carrier of the disease. India is a typical example of the impact of tuberculosis on the socio-economic prosperity of developing nations, where the maximum prevalence of tuberculosis is witnessed. In the last decade India has demonstrated economic advances to make it one of the foremost of the developing nations. Even so, India contributes nearly one third of the global burden of tuberculosis. The severity of the impact on its economic productivity can be gauged from the loss of productivity, as indicated by studies conducted. These studies have shown that the average duration of wage loss was 47.1 days, as a result of the morbidity of the disease, as well as social compulsions that cause a tuberculosis-stricken person to be absent from the workplace. (11). Second Level of the Embodiment of Tuberculosis-related Stigma: The second or social body level encompasses the lived individual experiences of tuberculosis related stigma and social suffering in the context of socio-economic class, gender and ethnicity. Socio-economic class and tuberculosis have an inverse relationship with the rate of tuberculosis being significantly higher in socio-economically deprived communities. (12). This association of tuberculosis with poverty has created and reinforced the stereotypes and fears about the disease, such as the disease being self-inflicted and that individuals had control over catching the disease. A study done in the USA in 1999, illustrates tuberculosis-related stigma and social suffering in the context of socio-economic class and ethnicity. Although the United States of America, as a developed country has experienced a significant decrease in the number of tuberculosis cases over time, there has been a recent rapid resurgence in pockets of the country consisting largely of African-Americans and Asian immigrants. These two groups are more likely to be socio-economically deprived in comparison to White Americans. Ethnicity like socio-economic class has a profound effect on the level of tuberculosis related stigma and social suffering experienced, with Blacks viewing the disease as being embarrassing, dirty and being more likely to attack bad people. (8). In contrast, Whites and Hispanic Americans perceived tuberculosis to be less threatening and more acceptable with moral status not being factor to catching the disease. Thus social stigma and the level of social suffering experienced by tuberculosis sufferers demonstrated contrast. Whites and Hispanic Americans perceived tuberculosis to be less threatening and more acceptable with moral status not being factor to catching the disease. Social stigma and the level of social suffering experienced by tuberculosis sufferers are considerably less in the latter ethnic groups with more stigma being implicit rather than explicit. Although many non-tuberculosis individuals in the Black community acknowledge that the disease is treatable, there is still a large widespread cultural belief that tuberculosis sufferer are ‘alcoholics, drug users, all those people’. (8). This cultural belief is hard to change and Black patients, like the Peruvian tuberculosis patients experience social isolation and avoidance by others as poignant put by one sufferer ‘My cousins, they said, you’ve got it, we’re going to stay away from you’. (8). Identification of low socio-economic class and certain ethnic groups as risk factors diverts attention away from the macro levels forces that reinforce tuberculosis related stigma and social suffering and instead puts responsibility at the level of the individual as well as creating a blame complexity, as justification by non-tuberculosis sufferers for the stigma associated with the disease. The concept of risk is used to establish and maintain not only cultural barriers between ethnic groups, but to a certain extent even socio-economic barriers between classes of people. Patients experienced stigma not only from people of other cultural backgrounds, but also from individuals of their own ethnic groups. Such views are not easy to change and the potent collection of community beliefs that have been built over many years leading to tuberculosis related stigma is very difficult to modify. Gender is also a factor in tuberculosis-related stigma and social suffering which impacts more heavily on women than men. Tuberculosis in women frequently leads to infertility and in pregnant women; there is an increased risk of having premature babies, perinatal death and low birth weight. Rapid deterioration in physical health is also another common side effect of tuberculosis, which leads to an inability to carry out household chores or look after the child. In some traditional societies such as India and Pakistan, tuberculosis-related stigma and social suffering is more severe as a woman who is unable to fulfil her tradition wife role of bearing babies, looking after the house and children is at risk of rejection by husbands, marriage breakdown, divorce and harassment by in-laws. (13). Third Level of the Embodiment of Tuberculosis-related Stigma: The third level or the politic body refers to the way in which the body is controlled and regulated within society. Humans live within a social order that is regulated by hierarchies and inequalities. Tuberculosis related stigma not only joins individuals together in a common suffering, but also divides them in terms of ‘exposure to risk, access to treatment, their ability to confront the problem and their chance to die with dignity (13). Tuberculosis related stigma plays a key role in creating and reinforcing relations of control, causing some groups such as tuberculosis sufferers to be devalued and others non tuberculosis sufferers to feel that they are in some way superior. (14). Stigma is central to establishing and maintaining social order in society. An example which highlights how at the third level, the ‘self’ does not have control over the body is that of tuberculosis patient Robert David in Haiti. (15). An individual despite his best efforts to control and treat his tuberculosis was let down by a multitude of societal failures and external factors which he had no control over. David endured numerous obstacles including an inability to pay for his medication, the healthcare clinic being two days away and not easily accessible, the only pharmacy where he picks up his medication being bombed due to instability in Haiti, political upheavals closing down roads. This example accentuates how a body can be controlled by the political climate of the time, healthcare infrastructure and the manner in which the socio-economic condition is a determinant of fate. (15). Conclusion: Tuberculosis is a widely prevalent disease associated with the socio-economical backward segments of society. Just as wide is its prevalence, so is the stigma that is attached to the disease. The embodiment of this tuberculosis-related stigma causes individual sufferings that originate from underpinnings in societal, cultural, historical and political contexts. On an individual level the embodiment of tuberculosis-related stigma cause individuals to believe that they are the cause of the spread of the disease and feel let down by their bodies. The embodiment of tuberculosis-related stigma has a class orientation, because it is thought to be mostly prevalent in the socially backward segments of society, making the victims of the disease less acceptable in the other segments of society and being apportioned the blame for the prevalence of the disease. Tuberculosis victims are thus a deviation from the accepted cultural norms of society and as such treated as social outcasts. There is a gender influence on the tuberculosis-related stigma, as it has an effect on the fertility of women. In societies where the fertility of women is given high importance tuberculosis in women leads to higher isolation from society. In an already social backward segment of society tuberculosis leads to further deprivation, as the morbidity of the disease, as well as the social repercussions, cause an enormous loss of the money earning capacity of the individual due to inability to attend work. This has a bearing not just on the upkeep of the individual and family, but also on the compliance with treatment requirements. These hardships can be further enhanced by unsettled political climate in the country and complacence on the part of the political authorities. As a result of the embodiment of stigma that has been attached to tuberculosis, it differentiates itself from other socially dreaded diseases like HIV, or conditions like mental problems. It is also because of the stigma attached to tuberculosis that there is less awareness among the populations and willingness among social agencies and political authorities for activity and resources towards the treatment of tuberculosis victims and combating the disease that has reached epidemic proportions. Works Cited 1. Whitaker, Elizabeth. “Health and Healing in comparative perspective”. 2006. 2. Ziv, Elad, Daley, L. Charles & Blower Sally. “Potential Public Health Impact of New Tuberculosis Vaccines”. Emerging Infectious Diseases. 2004. Medscape Today. 7 Oct. 2006. http://www.medscape.com/viewarticle/489054. 3. Macq, T., et al. “An exploration of the social stigma of tuberculosis in five "municipios" of Nicaragua to reflect on local interventions”. Health Policy 74.2 (2005): 205-217. 4. Ho, Ming-Jung, “Migratory journeys and tuberculosis risk”. 2003 5. Jaye, C. “Talking around embodiment: the views of GPs following participation in medical anthropology courses”. 6. Turner. 1994. 7. Scheper-Hughes. 1994. 8. Kelly, Patricia. “Isolation and stigma: the experience of patients with active tuberculosis”. 1999. 9. Khan. 2002. 10. Mori, T. “Tuberculosis and society”. Kekkaku 78.2 (2003): 95-100. 11. Ray, T.K., et al. “Economic burden of tuberculosis in patients attending DOT centres in Delhi”. The Journal of communicable diseases 37.2 (2005): 93-98. 12. Mackenbach & Howden-Chapman. “New perspectives on socio-economic inequalities in health “. 2003. 13. Fassin, Didier. “The embodiment of inequality: Gender and tuberculosis. 2002. 14. Parker & Aggleton. “HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action”. 2003. 15. Farmer. 1992 Read More