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Surviving TB: “TB Cannot Defeat You; You Have To Defeat It”

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In 2018, I had just completed my graduation and was busy with my MSc Degree. Life was filled with work and new goals. Amidst all the stress of studying, one day, my arm started hurting a lot. In a few days, the arm swelled up and my left elbow was burning with pain. 

I visited an orthopaedic doctor near my place who diagnosed me with arthritis. I took medication for it for about 3 whole months with no improvement in my condition. So I decided to visit a private medical clinic. In this clinic, the doctors said that it wasn’t just arthritis, and they told me to see a doctor at SSKM hospital in Kolkata. 

My father then took me to seek help at SSKM hospital. The doctors here were understanding, they suspected that there was pus in the infected area, and I was told to get certain tests done. It was through those tests that I was finally diagnosed with Extra-Pulmonary Multidrug-Resistant Tuberculosis (MDR-TB).

I was a medical student and added to that my uncle had also been a TB patient and, thus, I knew what TB was, but even I was not aware of MDR-TB. I talked to my doctors about the same and tried to understand what it was. When I asked my doctor about my condition for the first time, he told me: “MDR TB is a little different, a little more complicated and risky than the TB you’ve heard about. But you need not worry. All you have to do is complete your course of medication and you’ll be fine.”

Looking at the determination of my family and their faces full of hope gave me strength and I decided I had to complete treatment for my family and myself.

I didn’t have to face any stigma from the doctors or the hospital staff, they were always supportive and helpful, but I think a reason for that was that I had extra-pulmonary TB — it was not contagious. I had seen and also heard about doctors and medical staff in my hospital often discriminating against, and poorly treating TB patients who had pulmonary TB. 

Initially, my father was terrified though I wasn’t. Fear started setting in when my medical procedure started — the injections and the pills were just scary. I remember it was 20 June, 2018, when I started my medication from a local government DOTS Centre. In my course, I was prescribed a series of injections and about 13 pills in a single day. The injections for me were the most challenging part of the treatment. I had a total of 154 injections and they were all excessively painful and brought along with them a lot of side-effects. 

Side effects are a huge and scary part of a patient’s journey of fighting TB. My vomiting lasted for about two entire years, exactly till the time that my medication lasted. My taste buds were also acting funny. I had excruciating pain in my legs; my eyesight wasn’t as it used to be and I used to hear a ringing in my ears almost all the time. I went to an ENT to get that checked, where they informed me that this was just a side effect of an injection prescribed to me. 

This was not all. The side effects of the treatment caused a lot of mental health issues. I would have negative thoughts every day, and at one point, I even had suicidal tendencies. I told my father about my mental health and he took me to a psychiatrist. I was diagnosed with depression. The psychiatrist was of huge help. They told me how this was a side effect of Cycloserine, an important part of my course of medication. I was forced to think: Even with all the advancement in science, why do we use such medicines? The psychiatrist made the journey of this fight against TB bearable. 

I was lucky my family and friends supported me throughout this journey and were there for me in any way possible. My extended family was also caring. My friends would keep in touch, ask about my health, and often come to meet me too. My father and the whole family was my biggest support. It made me understand the importance of a supportive family and good friends during illness. I wondered what happens to those who don’t have it.

One day I was scrolling through Facebook where I found a video of an actress talking about how she survived difficulties in her life. From there, I started searching more and more about other survivors in journals, magazines and on the internet. 

I started reading up on TB survivors and their lives after TB. It was then that I came across a page called Survivors Against TB, where I saw so many TB survivors talking about their life as a TB patient and how they overcame this life-changing disease. This gave me strength and courage. Their stories motivated and inspired me to keep fighting. I felt like I wasn’t alone. I felt others had faced what I was facing and overcame it and so would I.

At many points during my treatment, I thought I couldn’t take it anymore; continuing treatment was tough and I considered leaving it in the middle, even in my last month of treatment. But looking at the determination of my family and their faces full of hope, and by narratives of all the survivors gave me strength and I decided I had to complete treatment for my family and myself.

Post cure, many TB patients have started reaching out with their concerns. It reminds me of how they are where I was at one point in time and I try my best to give them strength, tell them not to leave their treatment and tell them to hold on and win this fight.

Looking back at my journey, I realise how TB is a test that some of us have to pass and that’s what I tell others too. This is life’s exam, and you pass it, for your family, for other people who might have to give the same exam, and for yourself. Once over, there’s no looking back; you just look forward to all the good things yet to come in your life. TB cannot defeat you; you have to defeat it.

Written by Koushik Nayak

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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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