This post has been self-published on Youth Ki Awaaz by Survivors Against TB. Just like them, anyone can publish on Youth Ki Awaaz.

TB Is Curable, Stigma Is Not

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By: Ms Debshree Lokhande

Six years ago, when I walked into a small sleepy x-ray lab in Ahmedabad with a persistent cough and dramatic weight loss, I was as aware of TB as I was, about a stronger viral infection.  TB (tuberculosis), was just a word of science until then, a fleeting fact learnt at school. All I knew about it was that it is an airborne disease that was prevalent in the older times. I was unaware of all the stigma and baggage it brings, especially in our society.

I still remember how my grandmother, who was accompanying me to the x-ray lab, reacted to the sinister proclamation of the radiologist – that I have TB and it has spread quite a bit in one lung.

A woman who had loved and supported me always was so shocked to hear those words that she told me not to tell anyone that I had TB and not to call my parents immediately to inform them. I didn’t understand it then, I do now.

Photo Credits: Rohit Saha

Some might think why she reacted so insensitively in the face of such a sudden setback. It is our society which has tarnished the word illness into a dreadful and stigmatized disease.

Why can’t TB just be looked at as an illness? Maybe like a dangerous form of a common cold? Why do we think of the patient and their families as culprits? Why do we turn away from them? Make them feel like criminals?

Yes, it’s infectious, but one-third of the world’s population carries latent TB. Anyone can get TB. Yes, it happens most often to those with poor immunity. But is that their fault? There are numerous misconceptions about the disease and hence ignorance and stigma. For instance, not all TB is communicable. Even when it is, patients become non-infectious very quickly with the correct treatment.

Society, the public health establishment and even communities remain oblivious to the stigma issue. It’s covered up. We are asked to remain silent. We cannot talk about our disease; it’s dirty, it’s despicable. And so are we? How is it our fault? Do you say the same thing to someone with cancer?

Photo Credits: Rohit Saha

The inhumanity meted out to TB patients is a deeply worrisome mistake.

When I was diagnosed everyone was asking me the most insensitive questions. They were only focusing on:

 “Why did I get TB?”

“Were you careless with food?”

“Why do you sleep so erratically?”

“Why aren’t you positive?”

“Why do you look so weak?”

“Why do you vomit everything out?”

“Why don’t you feel like eating anything?”

“Why do you not have the energy to walk around?”

“Did your Parents not take good care of you?”

“Is it hereditary?”

All these questions pushed me into a bigger cage of self-hate and doubt. Society stigmatises us, and we stigmatize ourselves. It’s a vicious circle and self-defeating one. We cannot break the cage or end the silence.

Instead of focusing on what can be done to change or improve my situation, all my energy and peace of mind was disturbed. I was anxious, doubtful, full of confusion. Why me? I barely had the energy to walk out of my bed, let alone research on the internet about remedies or developments in the field. And this state of mind added to my pain.

Those few friends and relatives – who like me had never heard of TB – saw all the ghastly stories and deadly reputation that TB has only, and they too started avoiding our house and me. I was suddenly more isolated than ever before. The isolation from those who we counted our own, is what hurt most.

We hate ourselves too. We hate our bodies, our lack of strength, for not being resilient enough to fight TB. When in fact, it was the job of the medicine to fight the disease.

Incorrect diagnosis and treatment for three years had worsened my disease and depleted my strength. I had lost a staggering 22kgs because TB patients who’re given incorrect medicine do not feel hungry. Poor breathing capacity, meaning I could barely climb two flights of stairs to my best friends’ wedding, let alone dance there. I had a brown tint to my skin which had cracked because of extreme dryness. It is a common reversible side effect of a TB medicine. I had never realised how shallow so many of my friends, relatives etc. were when they would keep looking at how my skin colour changed so much. And some even today, ask me about when the medicine will get over.

Photo Credit: Rohit Saha

How does skin colour define beauty or acceptability? How does body shape define beauty or acceptance? Does TB kill the humanity in others? I struggled with these questions.

The biggest stigma, even bigger than TB perhaps, was the stigma associated with my Deafness, a common side effect of an injectable medicine for TB – Kanamycin. I was left to reading the expressions of dejection and hopelessness and anger on my parents and sister’s face to understand what people would say about how careless we all have been for not getting a cure for TB. How could they see a wasted body?

The isolation from people because I couldn’t talk or hear, pushed me to a point that I had finally given up. Just once I asked my mother, “Let Me Go” – and that moment she pulled me up from my bed and promised me that she’ll never leave me. Yes, that moment is all that mattered. Love, hope, strength-everything came from there.

Within a week of that moment, my mother took me to Dr Zarir Udwadia in Mumbai. Dr Udwadia treats a patient with grit – with a deadline – he knows that the first test is the crucial decider of which drugs will work. He solves problems – always. He tries to help any patient in any way he can.

It was because of his goodwill that I was approved for Bedaquiline twice for six months and twice for Delamanid too – all in three years. These drugs remain unavailable to most TB patients in India. He, along with like-minded TB activists, helped in arranging funds for my Pneumonectomy via an online Fundraising Campaign.

As I defeated TB, the need to shatter the silence around it was overwhelming. I needed to speak out. To let others know about the fight but also the inhumanity meted out to TB in our Indian Society. After learning from six years of society’s double standards, I opened up online about the struggle, mainly a financial one, in fighting this disease. I refuse to give importance to anyone who cannot respect the struggle and who cannot comprehend that TB can happen to anyone. Healing a patient with some kind words is also enough, but not the isolation. I now ask everyone just three simple questions:

  • What if you or your loved ones got TB?
  • Would you like to be abandoned or abandon them?
  • Would they mean less to you? Or you to them?

Stop stigmatizing TB. Stop it!

It’s curable!

You are killing people with your ignorance and hate.

Be humane, not just “human”.

Stop stigmatising TB now!

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.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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