I battled the worst form of tuberculosis for six years. As I began to talk more about my journey with TB, I realised that men aren’t spared either. They are treated poorly too, sometimes losing employment. They are scared and unsure of what the future held. Like women, they are also subjected to face the stigma within families and communities. Unfortunately, only a few of them speak out about it.
At 16, when I was preparing for my board exams, I developed a persistent cough. Upon testing, I was diagnosed with TB. The doctors administered the conventional tuberculosis medicines on me, one after another. For many months, they tried a lot of drugs, but nothing was working. My condition only kept worsening. Several months later, the doctors concluded that I have contracted Multi-Drug Resistant TB (MDR-TB), a more severe type of tuberculosis, with a lesser chance of cure.
The medicines had a lot of side effects. While one affected my appearance, turning my complexion darker, another made me irritable and suicidal. I was afraid to look into the mirror at myself.
When I recovered from my surgery my parents were flooded with questions, “Now that she has had a surgery, who would marry her?”
It makes you feel that the only purpose of a woman’s existence is marriage and kids. The society seems to forget that with such behaviour, the mental strain that it inflicts on a TB patient, far outlives the physical pain of TB.
I had to undergo another critical and heavily expensive surgery. Before my surgery, even one doctor told my parents that spending on the operation is futile, as I have around 1% chance of survival. He advised them to try keeping me happy and fulfilling all my wishes until my end comes.
While entering the operation theatre, I was singing. I knew the end result would be a relief from it all. If I die, then all my pain and suffering ends there. If I live, then my life starts healthy and afresh.
In India, when a woman or a man contracts TB, their life changes forever. There begins a strange isolation where they are forced into silence because of their condition. They face discrimination, and none can be open about it. To women, people ask the most insensitive questions. These could range from marriage and future to even the possibility of being a mother. Unfortunately, this stigmatisation of TB patients is rarely recognised or understood.
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.
The fear of losing social status, marital problems and hurtful behaviour by the community are some of the reasons why a TB affected person is unable to seek help. It causes mental health issues. I regularly come across stories where the stigma makes many abandon treatment.
TB can happen to anyone. Stigma occurs because of community and institutional ignorance, and mistaken norms about undesirable diseases. The most common cause 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 association with HIV, poverty, low social status, 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 and its repercussions. 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 the taboo against TB, our battle against TB shall remain incomplete.”
– Deepti Chavan, 34, MDR-TB Survivor