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TB Creeps Up On You When You’re Not Looking: The Story Of My Sickness And Recovery

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It was 2011. I was a busy entrepreneur setting up my furniture and home store and a mother of two. I remember the days were long, filled with moments of stress and exhaustion. Yet, I pushed myself and kept going. We all do that thinking this is what is expected of us.

In all this stress, I didn’t realise that I had been coughing for over two months by then. I just thought it was a reaction to my damp and musty office. I thought of it as an allergy and that it would eventually go. But it didn’t.

When you have two kids, a home to run, a new business to set up it creates enough complications in life. You feel an allergy isn’t your top priority. You overlook the warning signs. When it was time to eat, I just ate when I needed to. I always thought of myself as healthy, otherwise. I was conscious of my fitness – doing power yoga four days a week and also doing other forms of exercises. I was careful about what I ate and usually ate well. I was a vegetarian with eggs in my diet. In truth, however, I had stopped listening to the signals my body was trying to give me. At that age, you eat well, exercise, look after yourself and think you are invincible – falling sick is the last thing on your mind.

When my cough spiralled out of control, I went to a General Physician (GP) near my apartment. I got pills for a minor chest infection. While my health didn’t improve, I was too busy to notice. And then one night I woke up with a searing pain in my chest. My husband had to call a cousin who was a doctor, in the middle of the night. Our cousin asked me to get an x-ray immediately.

What my x-ray revealed, shocked me. It showed a dense spread of TB and a perforated lung. My chest specialist said he hadn’t seen this much TB in a long time. And certainly not in the body of an educated, reasonably well-to-do person who was healthy, otherwise.

Ironically, like many others, up until then I thought TB was a disease that happened to those with poor nutrition and compromised, poor living conditions. I was shocked and confused about the diagnosis. Shock gave way to anger and anxiety – how could someone as aware as I, let things get this bad? Could I have infected my kids, family, staff and those around me? As a workaholic, I wondered if I could go back to work. My doctor told me, that I was about two days away from collapsing. That’s when it hit me. My weight had dropped to 42 kg. I looked like a ghost, gaunt and almost lifeless. I was seriously ill.

I looked around and weighed in my options. I was a mother with a fledgeling business. My husband looked like he would collapse if I did. I had to make things right. I had to get better. I decided to beat TB at any cost. I took the four drug combo and managed to hold it down. It took a good four months before my x-rays started showing the TB receding.

While I was determined, surviving TB was anything but easy. For two weeks I didn’t hug the kids, worked remotely and with a mask. I began to realise that fighting TB was more than just taking medicines. I was exhausted and nauseated all the time. I had no appetite, and all my clothes were stained yellow from the drugs that stained my perspiration. There were days when I could barely get out of bed. I just told people that I had a severe chest infection, as I was scared of how they would react if I told them. We don’t talk about it, but stigma and incorrect perceptions about TB continue to exist widely even among the so-called informed folks. I wondered if I would die. I felt very, very, alone during this time.

I asked my doctor if I should inform anyone or get anyone tested. He said that living in a city like Mumbai we were all exposed to TB antigens. And it was when our immune systems were compromised that active TB manifested. I remember feeling frustrated that I didn’t know enough about TB.

Once I was declared TB free, I had to work on increasing my lung capacity. I was breathing so shallow – almost like I was sipping breaths. I went back to yoga and worked out diligently. Then I undertook a fitness program that took me to almost athlete like fitness.

Today I work with the same company, I now recognise the role of stress in my contracting the disease. Stress keeps your body in a constant fight or flight mode – the beta state. And, in retrospect, I’m not surprised, that stress weakened my immune system.

I learnt that good nutrition and wellness is necessary to prevent a plethora of lifestyle diseases. As women, we often forget to take care of ourselves. We are so concerned about taking care of others that we think nothing of skipping meals, not getting enough sleep, and of course, considering stress to be de rigueur in our lives. I am taking active steps to better my life, at a spiritual level too. I now recognise the things that once seemed important to me, no longer are. Every moment is precious. I’m learning how to enjoy this life of bounty and good health and how to just be.

The author is a member of Survivors Against TB. All pictures have been clicked by Ms Shampa Kabi.

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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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