Living with Tuberculosis: The Myths and the Stigma from the Indian Perspective

Abstract

We thank Hamilton et al. for focusing on global health issue of tuberculosis (TB) and highlighting importance of funding and research for TB control. However in India which bears one-third of worlds TB burden myths and stigma revolving around TB and its treatment have to be targeted to improve TB control. In India patients with TB often experience rejection and social isolation. Because of lack of knowledge about disease and fear of being ostracized persons with TB often hide their symptoms and fail to receive appropriate treatment-a stumbling block in control of disease. A common belief is that TB is incurable and that drugs for treatment of TB can harm patient. Many fear that TB can cause impotence and sterility. The public is misinformed about modes of spread of disease and believe that TB is hereditary or spread in ways similar to those by which AIDS is spread such as unsafe sex practices. The belief that TB spreads through handshakingand sharing food with an infected person causes patient to keep their condition a secret for fear of being shunned even by their own family members. Patients with TB are often economic and social outcasts with poor emotional quality of life low self-esteem and clinical depression which may even lead to suicide. Men affected by disease who usually provide sole financial support for family are forced to quit their jobs and thus experience extreme debt and poverty. Other patients have a reduced capacity to work and have to take long leaves of absence from work with end result being financial burden. Single women often find it difficult to find life partners and are rejected. Married women are abused by their in-laws and deserted by their husbands. A woman abandoned by her husband is often isolated and for her to have any social relations is considered to be taboo. The stigma has taken a greater toll on women than on men. Many of patients who start receiving therapy frequently in secrecy stop as soon as they start to develop adverse effects such as orange discoloration of skin (seen with rifampin a first-line drug for TB therapy) which reveals to community that patient has TB. Discontinuation of therapy can lead to emergence of multidrug-resistant TB and extensively drug-resistant TB which are difficult to treat and can be fatal. Owing to large psychosocial impact of this debilitating disease focus should not just be on early detection and symptomatic and microbiological cure but should also be on providing psychosocial support to patients and their families. Although importance of research and clinical trials of TB is unquestionable health education of masses by community health programs to dispel myths and stigma surrounding disease and its treatment cannot be overemphasized in Indias progress toward controlling TB- the captain of all men of death. (full text)