What My Journey With TB And Its Associated Stigma Taught Me

By Deepti Chavan:

When I first started talking about tuberculosis (TB), numerous women wrote to me. It became something of a TB sisterhood. Like all sisterhoods, the women spoke frankly about fighting TB – how they are forced to remain silent and often cannot tell their in-laws that they have TB.

They hide the fact that they are taking any treatment, gulping down medicines at night when everyone else is sleeping. The unhappier stories were about husbands wanting divorces, being thrown out of homes, kept away from their children just because they have or had TB.

As I began to talk more about my journey with TB, I realised men aren’t spared either. They are treated poorly too, sometimes losing employment, hiding their disease; scared and unsure of what the future held. While many women fear rejection by their families and societies, many Indian men also face the wrath of stigma within families and communities. They just haven’t been able to speak about it. 

TB survivor Deepti Chavan, at a beach. (Photo provided by author)

In India, when a woman or a man contracts TB, their life changes forever. There begins strange isolation where they are forced into silence due to their condition. Both face discrimination, and none can be open about it. Women are subjected to the most insensitive questions. These could range from marriage and future to even the possibility of being a mother. Unfortunately, this stigmatised side of TB is rarely recognized or understood.

So, what happens to millions of those who get affected by TB, every year? India which has the highest burden of TB in the world and where one Indian dies of TB every minute, we continue to discriminate. How is it their fault that they contracted an airborne disease? Perhaps, it has to do with ignorance. For the TB affected, discrimination at workplaces, schools, social isolation, neglect and abandonment are a reality in India and the silence is never-ending. 

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. 

When I recovered from my surgery my parents were constantly inundated with questions, “now that she is out of surgery, who would marry her?” It makes you feel like the only purpose of a woman’s existence is marriage and kids. We seem to forget that with this behaviour, the mental strain that we as a society inflict on a TB affected, far outlives the physical pain that TB causes.

Moreover, the stigma associated with TB is often regarded as a strong barrier to health-seeking behaviour and is a cause of significant suffering. The fear of losing social status, marital problems and hurtful behaviour by the community are some of the examples why a TB affected person is unable to seek help.

Stigma also has an impact on continuing treatment. It causes mental health issues. I regularly come across stories where the stigma makes those affected abandon treatment. 

So who shall address this issue? It’s the job of the state but really also of the medical community and of all of us. TB can happen to anyone. Stigma occurs because of community, institutional ignorance and mistaken norms about undesirable diseases. The most common cause of TB stigma 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 associations with HIV, poverty, low social class, 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, stigma and its repercussions on a TB patient are essential.

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 stigma, our battle against TB shall remain incomplete and our desire to eliminate TB from India; unfulfilled.

Note: this article was first published here.

Featured image provided by author.
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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.

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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.

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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.

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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.

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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.

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A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
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