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Life After Tuberculosis Can Be As Glorious As You Want It To Be

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By Deepti Chavan and Saurabh Rane:

(This is an extract from our latest publication, “Tuberculosis- India’s Ticking Time Bomb – The Survivors’ Manifesto”. The chapter has been co-authored by Deepti [an MDR TB Survivor] and Saurabh [an MDR TB Survivor])

Prior to our brush with TB, we were on our respective trajectories of growth – be it in our careers or in our personal lives. When TB hit us, it hit us hard. We were clueless and unprepared. We had no idea where we could seek care from and how to even start grappling with the situation. Worst of all, our families were affected more than us.

Life after TB is not devoid of challenges. There is no guidance, there is a lot of confusion around complete recovery, relapse and care, post TB. We want to say that there is life after TB. If anything, it is as glorious as you want it to be. So, how does one rebuild life after surviving TB? It’s a question we are frequently asked. Here are some pointers on how survivors can reclaim their lives and how society and the state can help them:

PC: Prachi Gupta
  • Strengthen the physical being: Owing to our drug resistant statuses, two years of that horrible treatment took our sanities and threatened to take our hearing, liver functions and lives. We lost a part of our respective lungs to TB. We lost track of all the changes our respective bodies were undergoing. Every day is a challenge – walking, running, climbing stairs. We still have issues with digestion as the DR TB medication took a toll on our bodies. It impacted our ability to deal with the pain.However, our diagnoses weren’t the end of the world. We began taking small steps towards improving our physical being. Post a dialogue with our doctors, we began observing an exercise routine. A little bit of stretching and a balanced diet go a long way in nourishing one’s body. This is where post-treatment advice is critically important for survivors. They don’t just need to recover. They need to build strength. The medical community, the state and the family have a role to play here.
  • Rebuild mental capacities and aspirations: Apart from shunting between one doctor and the next, the challenges of diagnosis, treatment and lack of information left our lives gloomy. As if this wasn’t enough, our respective self-images went down the drain.Talk about your TB. Talking always helps. It will give you the confidence you need to remain afloat. It’s inevitable that TB will impact you mentally. However, the process to recover has to be worked on. You cannot let your life end there. Rather, allow the experience to nourish you with critical life lessons. We learnt ours. We were alone and subdued. It is critical to seek help. Engage with people around you – family, friends, your doctor – whoever you trust.Post- recovery counselling is critical in seeking closure and for the ability to rebuild yourself, mentally. Most importantly, believe in yourself – stay positive. Building a new life after TB is not difficult, all you need is faith in yourself. This, however, should be supported by the community and your family.
  • Create social connectedness: We felt as if we were never a part of the society – for so it was, with the society which excluded us. Now that we have managed to defeat TB, we understand the importance of integrating our lives with a new world. Of course, it is not easy. There will be people who may sever all ties with you, owing to your former ‘TB status’. But there are also people out there who will accept you wholeheartedly.Here, the role of the community and the government becomes extremely important. As communities, it is vital to accept people who have survived TB. This is only possible if large-scale public information campaigns are undertaken by the government to dispel any myths around TB as well as the survivors. For instance, many communities believe that TB is incurable and the chances of relapse are the highest after recovery. This is not true. If one manages to develop and maintain a high immunity, TB cannot impact anyone.
  • Create personal life goals: We feared forging loving relationships owing to our diseased status. We feared that we would be rejected. But does that mean one should get disheartened? No, it’s important to rather capitalise on the opportunities out there. You will lead a life without TB medication. The world is your oyster. However, for this, one needs to be self-driven. This is your road which you need to walk alone. Your family will support you, but this is indeed your battle – and yours alone. It is critical to find fulfilment in your personal lives. For instance, Deepti found a loving partner who married her and is a big supporter of her work as a TB advocate. One needs to keep the self buoyant at all times.
  • Creating career goals: When we finally managed to defeat TB, we decided to follow our respective careers. People told us how lucky we were to be alive, and that there was no point in building our careers again. We should not take risks and play it safe. We were appalled. Do TB survivors not have a right to professional growth? Are we to keep ourselves confined to our homes, just because people don’t believe in our abilities? We decided to forge our way ahead. We decided to defy these notions. Today, we have not only managed to build our careers but are also helping other patients fight TB effectively.
PC: Shampa Kabi

It’s been years since we recovered – and yet, every few days, we remind ourselves that we don’t have to take those pills anymore; that we don’t need to sleep upright tonight; that we don’t have to be close to the toilet after taking the pills anticipating all to come out along with the rest of the contents of our stomachs. Yes, there is life after TB – as normal or abnormal as you want it to be.

Trust us when we say that dying is easier. But defeating TB is heroic. And this is not your battle alone. If TB is to be uprooted, then the government needs to play its part, the policymakers need to play their part, the drug developers need to play their part. Everyone who breathes needs to play their part because we are all at risk. We all play a vital role in this fight and we need to take action. More so, we need to demand action. A significant challenge is the belief that the fight with TB is fought only in hospitals and clinics by doctors and other healthcare workers. While that is an arena where the battle is taking place, it is not the only one. This fight with TB needs to be fought by us all – not just the healthcare workers and the patients, but also the community at large.

It feels like it was a different life. At times, we cannot believe that it happened to us. But then, the scars from our surgeries remind us. They speak of a journey – one of loneliness, pain, tears and finally, salvation. They speak of our road to recovery. Let’s take a moment to just think of all those who did not make it. All those for whom life could not continue. The millions who lost their lives fighting DR TB. All those who are currently fighting DR TB and are losing the battle. All those who will not make it. That is exactly what it is – a fight. Not just a personal fight, but a global one.

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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 Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’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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