Tuberculosis is harsh enough without all the stigma

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TB survivors frequently face social repression that impedes their well-being at every stage — pre-diagnosis, treatment, and post-cure.

How does one forget that beneath the TB-infected lung lies a heart just as human as anyone else's?

In India, when a woman contracts TB, her life changes forever. There begins a strange isolation where she is forced into silence because of her condition. If she is open about it, people ask the most insensitive questions. These could range from marriage and future to even the possibility of being a mother. This stigmatised side of TB is rarely recognised or understood.

When I first started talking about TB, numerous women wrote to me. They (other women) told me that they cannot tell their in-laws that they have TB. They have to hide the fact that they are taking the treatment; they say they are forced to take all the medicines at night when everyone else is sleeping; the husband wants a divorce; they are thrown out of their houses; they are kept away from their children — just because they have TB.

 

Years later, I met a young man who was also a TB survivor. “While I was on my treatment, people used to scoff at me, ‘Look look, he is a TB patient’. They made me uncomfortable in my own home,” recalls Suraj, MDR TB survivor, smiling painfully. While many women fear rejection by their families and societies, many Indian men also suffer at the hands of families and communities. Some fear losing their jobs as discrimination at workplace is not uncommon.

Why is it that in India, which has the highest burden of TB in the world and where one Indian dies of TB every minute, we discriminate against the TB-affected? How is it their fault that they contracted an airborne disease? Perhaps, it has to do with ignorance but India is home to some of the worst forms of stigma manifestation. For those affected, discrimination at workplaces and schools, social isolation, neglect and abandonment are an everyday experience.

How do you address a disease when you cannot talk about it or admit that you have it? For instance, my parents were constantly inundated with questions such as: ”Now that she is out of surgery, who would marry her?” Instead of being happy for me that I had managed to defeat one of the deadliest strains of TB, they were more worried about who is going to marry me, ten years from then. The mental strain that our society inflicts on a TB-affected individual far outlives the physical pain that it causes.

  Survivors Against TB (SATB) is a community-based movement led by of a group of TB survivors working to strengthen India’s fight against TB. These survivors both understand and have the lived the experience of surviving TB in its severest forms and understand the social, economic and cultural circumstances in which individuals address TB. Based on these experiences these survivors advocate with key stakeholders on the changes necessary for making TB care more accessible and patient-centric in India. SATB believes that if India wishes to address TB comprehensively, it needs to start by listening to survivors and engaging them in relevant policymaking.

Stigma associated with TB is often regarded as a strong barrier to health-seeking behaviour and is a cause of significant suffering. An affected person can find oneself unable to seek help, fearing a loss in social status, marital problems or hurtful response from the community. Stigma can also have an impact on treatment adherence and the disposition of the family towards the patient. This in turn influences the mental health and well-being of the patient.

Stigma occurs because of community and institutional ignorance and mistaken norms about undesirable diseases. The most common cause of TB stigma is the perceived risk of transmission. The other common yet incorrect belief is that TB is somehow the result of poor hygiene and hence the sufferer's fault. However, TB is also stigmatised because of its associations with HIV, poverty, low social class, malnutrition or disreputable behaviour. In general, however, TB stigma leads to shame, mental trauma, discrimination, diagnostic delays and non-completion of treatment.

TB is normally cured within between six months and two years. But social stigma sticks on with patients being identified as ‘that person who had TB’ even long after the cure. Hence, the silence around TB is accentuated and mostly unbroken. We speak in whispers about a disease that affects millions every year.

The following collection of photos explores the deep-rooted stigma associated with TB as articulated by many survivors. It hopefully helps us understand where society and communities err in building an understanding of a disease that kills an Indian every minute.


So, what can be done to reduce the burden of stigma on TB patients? Massive public information campaigns to sensitise and educate the community on TB, stigma and its repercussions on the patient are essential. Special workshops and seminars within schools and colleges would also help in spreading awareness on TB and its impact on the society.

There is an increased need to replicate examples from other disease areas from India and globally. For instance, the experience from how HIV patients undergo socially tells us that stigma reduction is possible if we only focus on addressing it.

India’s previous campaigns on TB have almost never focussed on stigma. This is somewhat surprising considering the impact it can have. A TB patient should not have to live with stigma in addition to going through a toxic treatment regimen — all they need for complete recovery is a bit of empathy, acceptance and a supportive environment. Without addressing the issue of stigma, our battle against TB shall remain incomplete and our desire to eliminate TB from India unfulfilled.

(Deepti Chavan is a TB Advocate and Founding Member of Survivors Against TB)

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