Community Chitter Chatter on Stigma
Survivor to Survivor
Blessi: How much self-stigma did you face after being diagnosed with TB?
Rhea: Not so much self stigma as opposed to dealing with the stigma around me in society as a whole. People reacted disproportionately to the actual matter in hand – close relatives said no one would marry me, for example, so it’s best I hush about it. There were surprising reactions from those I least expected, including my doctor, who labelled TB as a poor man’s disease (which itself is stigmatising, both for the poor and anyone who contracts the disease – we all know TB can affect anyone).
Being educated and confident, I didn’t care what people think or felt as an endorsement of myself unless it was medically backed up. But to avoid any confrontation and ill-reactions, I felt it was best not to talk about my journey with TB, because of people’s reactions and misconceptions and just focus on getting better. People are not aware about TB. It took four years after being cured for me to publicly come out with the fact that I had TB and was cured. After I started talking about it, people around me came up to me and started admitting that they too had TB but never spoke about it, in that very familiar ‘hushed tone’. With a problem that is so rampant, it baffles me how everything has been kept under wraps because of stigma.
Blessi: Are there particular instances when self stigma would be more prevalent?
Rhea: I always wonder if my reaction may have been different if I had pulmonary TB (I had extra pulmonary TB – in the bone) and the knowledge that I was infectious/contagious may have made me feel a bit more stigmatized, as the last thing I would want to do is infect other people with TB.
I feel nobody wants to feel bad about themselves and put themselves in that position without society playing a huge role in directing how we feel about ourselves and reinforcing stigma, which may cause self stigma. When people around you constantly reinforce negative stereotypes, the person who is affected by TB needs to be that much braver to deal with it and come out stronger without getting inflicted with self stigma. This is apart from actually getting cured from the disease.
But what can solve the problem is increasing awareness. For example, I didn’t know that pulmonary TB is infectious only for the first 2 weeks after you start taking TB medicines. After 2 weeks you won’t be considered infectious, though you will have to take the treatment for 6 months else you may become drug resistant. That knowledge itself can help reduce stigma.
Blessi: Do you think addressing self stigma alone would solve the problem of stigma?
Rhea: What we primarily need to do is address people’s perception of TB and that can only be done if we raise awareness among the general public. While the stigma journey did not start with self stigma, I think a lot of people who are affected by TB end up with self stigma after the environment around them makes them behave a particular way, like not openly talking about TB ‘because what will people think’. If there is no societal stigma, I don’t feel there would be much self stigma.
To put things in perspective – If I have a cold, it’s so easy for me to talk about it. A cold is infectious too. But everyone knows that even if you catch it, it is easily curable. With TB, it is curable too, but will take many months to cure. It’s very easy for a person who has a cold to tell someone else, “Hey stay away from me, I have a cold”. But it’s very rare to hear someone say the same about TB. And that has everything to do with society’s perception of the disease. The truth is this — self stigma is a reinforcement of society’s stigmatising attitude.