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MyStory: Survived TB As Teen, Stigma Was Bigger And Scarier Than TB Itself

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I am a creative professional, photographer, independent woman and an Extensively Drug-Resistant Tuberculosis (XDR TB) survivor. The last bit is particularly relevant because when I was fighting TB, I looked for others – particularly women – who were openly stating that they had fought and defeated TB. Or that they had built productive lives after TB. Unfortunately, I found none. Usually, I always refrain from being in the limelight. As a photographer, my approach is to remain in the shadows and watch the action from afar. This time, however, I realised that I had to be in the limelight and speak out.

It was 2013. I was barely 19 when I began coughing and losing weight. Don’t all 19-year-olds get that from too much partying? Or staying out? But it wasn’t that. Tests revealed that I had XDR TB. I wasted no time in seeking the right treatment – mostly because I was aware of TB. You see, I come from a TB affected family. My father, grandfather and uncles have also had TB in the past, and all have recovered. Just to clarify TB isn’t genetic – it can happen to anyone. But until that point, I didn’t realise that such misconceptions about TB fuel its stigma. I thought of it as just another disease.

I did not think that my family’s history with TB was a problem. I did not speak of it with bitterness, but with optimism. It was this history that helped me understand what to expect and how to deal with the disease. I was well supported. People around me knew what to do, treated me with care and made me laugh. You know how people say, ‘No, we won’t go to her house, she has TB.’ None of that happened to me. And yet, I did witness the lack of awareness about TB. And it was damaging.

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Besides close family and friends, I did not tell anyone else about my TB. No one in my extended family, not my neighbours, nor the people in my college, knew about my hardships. I was sick but my sickness had no name. TB can be treated – but ignorance and prejudice – what to do about that? While my friends behaved normally with me, their parents would ask them to stay away from me. My friends used to tell them, ‘No, it’s normal, it could happen to anyone, we have to take precautions.’ Our generation, they understand, they inform themselves, ask questions. But the earlier generations, for them TB equals a lot of fear, they don’t have awareness. They aren’t insensitive – they just don’t know enough. The government and the medical community are so busy curing TB that they forget to tell people how to deal with the TB affected. What they don’t realise is how it slowly eats away at your self-confidence, destroys your self-image and causes depression. You feel weakened, sometimes unable to accept your own disease status. TB isn’t about medicines alone, it’s about acceptance, courage – we have ignored for far too long.

When I was diagnosed with XDR TB, I was scared and then I saw my family. I could see how troubled and upset they were. I decided to face TB head-on. But the stigma was bigger and scarier than TB itself. So many questions bothered me – Will I ever have a normal life? Why should there be any stigma? Why is there silence around TB?

In all honesty, the silence around TB suffocated me. I was lucky to have the support and love of family and friends. But what happens to those, who don’t have a strong support system in place? I hear horror stories every day – how TB patients hide their diagnosis because of a fear of being discriminated against or left alone. Women bear twice the burden of stigma as compared to men. Not that men are spared. While women live with this constant fear of abandonment by their husbands or in-laws, men face losing jobs/livelihoods. There is often rampant discrimination at workplaces for people who contract TB – when this disease is no one’s fault.

When I began talking about TB, I realised people were maintaining a distance. Not every TB is infectious and most patients become non-infectious soon after taking medication. Also, TB doesn’t affect your ability to have children. You can live a perfectly normal life after TB. Today, I have not only survived TB but also a spokesperson for TB survivors with a group called Survivors Against TB.

I enjoy talking about TB. I am energized by breaking this silence. Every day is a new day. I chose to speak about TB because I don’t want those affected by TB to suffer. If you have TB, talk about it, don’t hide it, it’s not anybody’s fault – certainly not yours. TB related stigma affects not just the patients, but also their families, and even communities.

Survivors Against TB’s effort is to talk about stigma and TB, and together with society, bring an end to it. Read more at Survivors Against TB.

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

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.
Support the cause you care for. Browse All CampaignsBrowse all campaigns

Supporting Education Of COVID Hit Students

19,200 Raised
Out of 20,00,000

Share

Supporting Acid Attack Survivors During COVID

26,651 Raised
Out of 20,00,000

Share

Providing Clothes To Tribal Children

1,11,860 Raised
Out of 9,00,000

Share

Back To School : Supporting Rural Education

26,931 Raised
Out of 15,00,000

Share

Rahat COVID: Relief Work by Goonj

1,04,887 Raised
Out of 10,00,000

Share

No To Hunger : Free Meals To Underprivileged

5,87,014 Raised
Out of 10,00,000

Share

Provide Ambulance : Help Them Reach Hospital On Time

3,82,370 Raised
Out of 10,00,000

Share

Support Pranitha To Donate Oxygen And Ration Kits

8,35,618 Raised
Out of 10,00,000

Share

Project Annapoorna : Become A Hunger Warrior

7,582 Raised
Out of 1,50,000

Share

The Stray Project : A Thought Of Humanity

41,094 Raised
Out of 2,50,000

Share

Ended

Stand By Ladakh

40,962 Raised
Out of 1,00,000

Share

Closed

Support our Frontline COVID Warriors

25,615 Raised
Out of 5,00,000

Share

KHAANACHAHIYE: Fighting Hunger In COVID19

97,02,146 Raised
Out of 1,00,00,000

Share

Campaign Closed
Brought machinery

Empower Poor Women To Rise Out Of Poverty

1,36,544 Raised
Out of 3,85,000

Share

9 Happy Fridges Installed
Ordered a minivan and sent for modification

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 !!

Let us know your thoughts on this story

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