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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

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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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Goonj Is Working With 1000’s Of Volunteers & Partner NGOs To Provide Covid-19 Relief In 18 States

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With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.

After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.

Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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KHAANACHAHIYE: Fighting Hunger In COVID19

95,54,369 Raised
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Goonj’s focus: 

Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.

Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.

“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.

Direct Monetary and Material Transfer

Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.

Information till 10th April 2020:

  • Distributed 15,100 ration kits reaching thousands of people
  • Reached 17,700 families
  • Supporting 12 community kitchen across India with 16,600kgs of ration
  • 77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
  • Provided direct financial support to 32 organisations
  • Made 42,800 cloth face masks
  • 24,900 cloth sanitary napkins produced
  • Produced 1500 litres of organic sanitiser

In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.

In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.

This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.

The need is huge.. We are there.. Need You too !!

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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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