While India is home to the highest burden of TB cases, awareness remains poor and stigma widespread. In extreme cases, it also leads to discrimination at workplaces and schools, social isolation and neglect. How do you address a disease when you cannot talk about it or admit that you have it?
This is a photo essay comprising of TB survivors who have faced stigma first hand. The purpose of this campaign is to highlight the detrimental effect of stigma on TB patients. Stay tuned to know more.
“Now that she has undergone surgery, who will marry her? People should be happy that I am well, or maybe concerned about me, not asking who will marry me ten years from now,” said Deepti Chavan, MDR TB survivor.
“The mental agony of TB supersedes its physical impact. And women happen to be at the receiving end of the stick. The society needs to change its outlook. India’s fight against TB will remain incomplete until the issue of stigma is not addressed,” said Manasi, XDR TB survivor.
“I realised that there is a silence around TB, as if it were my fault. I spent my entire college life pretending nothing was wrong with me. My doctor said I would face discrimination if I spoke about it. We can’t fight TB until we end the stigma,” said Nandita Venkatesan, extra pulmonary TB survivor.
“People don’t realize that stigma is not only restricted to women. It’s the stigma that kills not TB. The most important thing is support- you cannot fight TB until you have the right information and support of loved ones. I wonder how those patients who face stigma and don’t have any family support survive this disease,” said Saurabh Rane, an XDR TB survivor.
“‘Who will marry me? Who will marry my sibling?’ These were my next worries. I, for the longest time, didn’t want to share my story with anyone. I had begun to consider TB as my dead past. I didn’t even want a mention of TB in my future – only because, as a woman, I didn’t want to lead a lonely life,” said Keyuri Bhanusjali, an MDR TB survivor.
“Women suffer far greater stigma. We need programs that are specifically targeted at women. We need specially designed counselling programs for female patients and their families. We need to speak up against stigma,” said Sarika, an MDR TB survivor.
“We never spoke to our neighbours and friends about TB. If asked, we would term it as seasonal allergy. We have little kids. We don’t want people discriminating against them,” said Owais, an XDR TB survivor.
Survivors Against TB is a community-led movement which is fighting towards strengthening India’s fight against tuberculosis (TB). This article is a part of a campaign on TB and stigma.