By Deepti Chavan:
When I first started talking about tuberculosis (TB), numerous women wrote to me. It became something of a TB sisterhood. Like all sisterhoods, the women spoke frankly about fighting TB – how they are forced to remain silent and often cannot tell their in-laws that they have TB.
They hide the fact that they are taking any treatment, gulping down medicines at night when everyone else is sleeping. The unhappier stories were about husbands wanting divorces, being thrown out of homes, kept away from their children just because they have or had TB.
As I began to talk more about my journey with TB, I realised men aren’t spared either. They are treated poorly too, sometimes losing employment, hiding their disease; scared and unsure of what the future held. While many women fear rejection by their families and societies, many Indian men also face the wrath of stigma within families and communities. They just haven’t been able to speak about it.
In India, when a woman or a man contracts TB, their life changes forever. There begins strange isolation where they are forced into silence due to their condition. Both face discrimination, and none can be open about it. Women are subjected to the most insensitive questions. These could range from marriage and future to even the possibility of being a mother. Unfortunately, this stigmatised side of TB is rarely recognized or understood.
So, what happens to millions of those who get affected by TB, every year? India which has the highest burden of TB in the world and where one Indian dies of TB every minute, we continue to discriminate. How is it their fault that they contracted an airborne disease? Perhaps, it has to do with ignorance. For the TB affected, discrimination at workplaces, schools, social isolation, neglect and abandonment are a reality in India and the silence is never-ending.
How do you address a disease when you cannot talk about it or admit that you have it? You have to start by creating a public narrative around surviving TB that systematically works to reduce stigma and bring braver and more inspiring stories to the fore. You need to train the medical community, especially health workers, to ensure that those affected are dealt with in a non-stigmatising way.
Most importantly, you want to inform the families and communities to reduce stigma and make them more empathetic towards TB affected individuals.
When I recovered from my surgery my parents were constantly inundated with questions, “now that she is out of surgery, who would marry her?” It makes you feel like the only purpose of a woman’s existence is marriage and kids. We seem to forget that with this behaviour, the mental strain that we as a society inflict on a TB affected, far outlives the physical pain that TB causes.
Moreover, the stigma associated with TB is often regarded as a strong barrier to health-seeking behaviour and is a cause of significant suffering. The fear of losing social status, marital problems and hurtful behaviour by the community are some of the examples why a TB affected person is unable to seek help.
Stigma also has an impact on continuing treatment. It causes mental health issues. I regularly come across stories where the stigma makes those affected abandon treatment.
So who shall address this issue? It’s the job of the state but really also of the medical community and of all of us. TB can happen to anyone. Stigma occurs because of community, institutional ignorance and mistaken norms about undesirable diseases. The most common cause of TB stigma is the perceived risk of transmission. The other common, though incorrect belief, is that TB is somehow the result of poor hygiene and hence your fault.
However, TB is also stigmatised because of its associations with HIV, poverty, low social class, malnutrition, or disreputable behaviour.
We need to break these misapprehensions and the end the silence around TB. We need to stop speaking in whispers about a disease that affects millions every year. We need massive public information campaigns to sensitise and educate the community on TB, stigma and its repercussions on a TB patient are essential.
Special workshops and seminars within schools and colleges would also help in spreading awareness on TB and its impact on society. Most importantly we need to counsel and inform families about TB. We need an end to fear, ignorance and silence.
It’s hard enough consuming a toxic regimen, a TB patient should not have to live with stigma; all they need is acceptance and a supportive environment for complete recovery. Without addressing the issue of stigma, our battle against TB shall remain incomplete and our desire to eliminate TB from India; unfulfilled.
Note: this article was first published here.