By Saurabh Rane:
Stigma. They never quite explain it to us doctors. I spent a good four-and-half years in medical school, reading about stigma at multiple occasions. It was, at best, something that one had to keep in mind as a consequence of some illness. Yet, I only understood what it means and feels like, when I began my fight against tuberculosis (TB).
I was young when I got diagnosed with TB. I knew about the treatment and importance of dosages, nutrition and how it needs attention. However, I never really knew what stigma was and how much it can affect a person. It was a steep learning curve – the kind of learning that comes hard and hits harder.
Imagine feeling isolated, alone and left out when you need support the most. It’s hard to imagine where it starts. People often blame society and its misconceptions for TB. There is always that dreaded fear of infection. Then, there are those around you – family and friends. And there is you.
The truth is that the stigma around TB starts with the society, but nothing hurts more than self-stigmatisation. What is that you ask? When the world may not be isolating you, but you are busy isolating yourself from everyone else and pushing yourself into a corner. Why? Because the truth is that the silence around TB forces you into a spiral of isolation.
No one talks about it – and you find it hard to talk about it yourself. You wouldn’t want anyone to know what’s going on with you. If not treated, TB patients are quietly disregarded, with fear and are treated as if they are something untouchable. People stop noticing you, avoid you, erase you from their lives – ironically, in a country, with a million people having the same disease.
TB is curable, stigma is not. We need to fight it. How do we start? It starts with you and the people immediately around you. We need a dialogue around TB, the suffering and the mental impact involved.
There are so many cases where the wife cannot tell her husband about her diagnosis, because she fears being thrown out of the family. The poor can’t talk about it, because it only reinforces stereotypes. The rich do not accept the disease, because it is considered a ‘poor man’s disease’. At the workplace, the fear of losing your job prevents you from speaking up about it. In the end, we all fear isolation and loss.
Personally, I never ever spoke about it – till I realised that not telling people about the condition was holding me back to the extent that it was ruling and ruining my life. I remember popping pills in bathrooms, so that people wouldn’t ask me why I was consuming so many pills everyday. I was non-infectious. I was a doctor. Yet, I was not free of the fear of what the ‘others’ thought.
I loved playing football, but I remember just watching people play everyday. I couldn’t play, so I was excluded by myself. But even when I could play, I never gathered the courage to go up to them and ask them. Why? Because they would ask me what is wrong with me – and they wouldn’t let me play with them if I ever spoke the truth.
Stigma keeps you away from the things you love doing – and that’s the last thing a TB patient wants. I can only begin to imagine what a college student or a school-going child has to go through, when they are diagnosed with TB. It’s as if it isn’t enough taking so many pills, facing the side-effects – and yet, keep going on.
TB isn’t just a physically-draining disease – it’s a mentally-challenging battle too. Yet, most people in society don’t understand that.
Everyone may want an ‘extra-ordinary’ life, but TB patients struggle and just want an ‘ordinary’ life to start with. It makes you wonder why for no fault of your own, you are being judged and being put through this torture.
Do TB patients really deserve this? I was non-infectious, but still, I could not gather the courage to tell people about my condition. It always made me remember all the stories I had heard from others who faced so many challenges when they came out with their condition.
Awareness, the right knowledge and clarification of myths, understanding the patients’ perspective and empathy for the person can all mean so much. It can change the way TB patients feel about us, and the way we feel about them. It’s not just the family – but also the community and the government, who need to be equally responsible in tackling this problem.
We don’t just need diagnosis and treatment, we also need freedom from the stigma and silence around TB. The government needs to create more campaigns on spreading the right knowledge about TB. Let’s start from the base – from schools to colleges to workplaces, everyone should be sensitized about TB and its realities. It can happen to anyone and no one can change a thing. But what we can change is how it affects us.
A problem that is not acknowledged or spoken about cannot be solved. Speak about TB. The conversation will make the acceptance easier – and, in itself, solve several issues.
TB doesn’t always kill, but its stigma strangely can – leaving the patient alive, yet paralysed.
Saurabh Rane is a 25-year development professional who survived and overcame MDR TB.
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. 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. Why is it that in India, where one Indian dies of TB every minute, we discriminate against this disease? How do you address a disease when you cannot talk about it or admit that you have it? The purpose of this campaign is to highlight the detrimental effect of stigma on TB patients. Stay tuned to know more.