My Story: “After Surgery, Who Will Marry Me? People Asked When I Won My 6-Yr-Long Battle With TB”

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“When I first started talking about my 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 reveal to their in-laws that they have TB. They hide the fact that they are taking the treatment, taking all the medicines at night when everyone else is sleeping. The unhappier stories were about husbands wanting divorces, being thrown out of homes, forced to keep away from their children just because they have or had TB.

India has the highest burden of TB in the world and one Indian dies of TB every minute. So, what happens to millions of those who get affected by TB, every year? Discrimination at workplaces and schools, social isolation, neglect and abandonment are a reality in India.

No one has ever become poor by giving
– Anne Frank

I battled the worst form of tuberculosis for six years. As I began to talk more about my journey with TB, I realised that men aren’t spared either. They are treated poorly too, sometimes losing employment. They are scared and unsure of what the future held. Like women, they are also subjected to face the stigma within families and communities. Unfortunately, only a few of them speak out about it.

At 16, when I was preparing for my board exams, I developed a persistent cough. Upon testing, I was diagnosed with TB. The doctors administered the conventional tuberculosis medicines on me, one after another. For many months, they tried a lot of drugs, but nothing was working.  My condition only kept worsening. Several months later, the doctors concluded that I have contracted Multi-Drug Resistant TB (MDR-TB), a more severe type of tuberculosis, with a lesser chance of cure.

The medicines had a lot of side effects. While one affected my appearance, turning my complexion darker, another made me irritable and suicidal. I was afraid to look into the mirror at myself.

When I recovered from my surgery my parents were flooded with questions, “Now that she has had a surgery, who would marry her?”

It makes you feel that the only purpose of a woman’s existence is marriage and kids. The society seems to forget that with such behaviour, the mental strain that it inflicts on a TB patient, far outlives the physical pain of TB.

I had to undergo another critical and heavily expensive surgery. Before my surgery, even one doctor told my parents that spending on the operation is futile, as I have around 1% chance of survival. He advised them to try keeping me happy and fulfilling all my wishes until my end comes.

While entering the operation theatre, I was singing. I knew the end result would be a relief from it all. If I die, then all my pain and suffering ends there. If I live, then my life starts healthy and afresh.

In India, when a woman or a man contracts TB, their life changes forever. There begins a strange isolation where they are forced into silence because of their condition. They face discrimination, and none can be open about it. To women, people ask the most insensitive questions. These could range from marriage and future to even the possibility of being a mother. Unfortunately, this stigmatisation of TB patients is rarely recognised or understood.

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.

The fear of losing social status, marital problems and hurtful behaviour by the community are some of the reasons why a TB affected person is unable to seek help. It causes mental health issues. I regularly come across stories where the stigma makes many abandon treatment.

TB can happen to anyone. Stigma occurs because of community and institutional ignorance, and mistaken norms about undesirable diseases. The most common cause 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 association with HIV, poverty, low social status, 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 and its repercussions. 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 the taboo against TB, our battle against TB shall remain incomplete.”

–  Deepti Chavan, 34, MDR-TB Survivor

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It's not how much we give
but how much love we put into giving.
- Mother Theresa Quote

My Story: “Depressed, I Used To Contemplate Suicide; I Found My Calling In Barefoot College”

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“Have a purpose in life or else life will be of no purpose,”- a quote I truly started believing when I realised purpose was completely missing from my life. Deep in depression since 14 years of age, I started contemplating suicide, but thankfully, life had other plans for me. Coming to Jagriti Yatra in 2016 and then volunteering for it in 2017 brought me to Barefoot College and my life has found a new meaning since then.

Barefoot College (actual name – The Social Work and Research Centre) is a civil service organisation (CSO) situated in a remote village named Tilonia in Rajasthan.  Started in 1972 by Sanjit ‘Bunker’ Roy, the organisation operated community-based models for rural development. Most of the people here have no formal education and yet are doing wonders for the community. Barefoot College works in 14 domains which includes water, education, health, livelihood, women empowerment, rural handicrafts, WASH (water, sanitation and hygiene), and much more. It is a family of Barefoot professionals where everybody has no paper to show their qualification to do what they are doing.

I feel I belong here. As the founder Mr Bunker Roy in his TED talk said – it is the place for “the drop-outs, cop-outs, and wash-outs.” I feel I am one among them. I have a background in commerce and management, but I have discovered my true self through social service. My parents were involved in social work, so it was a part of my upbringing. But, I had never thought I would take it up as my full-time work.

My first role as a part of the education team of Barefoot College was to co-manage the Malala Project with a local person from Tilonia. We partnered with the Malala Fund for this project which focussed on girl child education, gender sensitivity, child rights, women empowerment, and child marriage. It led me to remote villages in Bihar, Uttar Pradesh, Madhya Pradesh, Rajasthan, and Uttarakhand. On the one hand, these villages mesmerised me with their scenic beauty, and on the flip side, I was exposed to the darker side of India where I encountered patriarchy, misogyny and ignorance. I fought with it with all my might. Sometimes I succeeded, sometimes I stumbled, but I never stopped.

The mission was to bring back dropouts to school and give adolescent girls and women a voice. My happiness knew no bounds when at the final event of the project, 80 girls spoke boldly about topics ranging from menstruation, women safety, abuse to alcoholism in front of high ranked government officials.

Through the project around 1500 girls and boys rejoined school and are continuing it. The realisation of what my team was able to achieve almost brought me to tears. I had never had the first-hand experience about what it means to struggle for basics like education.

Currently, I am looking after Shiksha Niketan, the day-school run by Barefoot College. My day is filled with laughs and cries and hugs and high-fives from more than 400 kids. This school has been a centre of excellence for more than three decades now. The children here are also exposed to gender and civic rights, STEAM (science, technology, engineering, arts, and mathematics), sustainability and environmental education along with the regular curriculum.

The children in the school come from marginalised communities, and regular health facilities are still not affordable for them. Also, sports always takes a backseat when it comes to a choice between sports and study. When I was battling depression, my father asked me to take up any sport because he felt that it prepares a person to face the hurdles of life. I, therefore, want to open the avenues of sports for these children. I am now running a crowdfunding campaign and trying to raise money for health and sports facilities for these children. This year, despite fewer facilities, some children were able to bring accolades for the school in the district tournaments. I wish that by next year they have all the training facilities to shine in many more competitions to come.

– Krati Gahlot, Staff with Barefoot College, Rajasthan

Also Read: “Through Volunteering, I Have Discovered How To Manage When Things Go Haywire That Never Involved Raising My Voice”

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Quote
It's not how much we give
but how much love we put into giving.
- Mother Theresa Quote
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