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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Emergency funds sent to 250 families

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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KhaanaChahiye.com Is Distributing 40,000+ Meals Per Day In Mumbai During Covid-19 Lockdown

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Every global crisis affects every country in a different way depending on their socio-economic background. The COVID 19 pandemic hit India straight in its gut. After the lockdown daily wage workers and people who are underprivileged have been rendered out of their jobs. This has ultimately pushed them to an acute financial crisis so much so that even being able to afford two meals a day has become impossible. While we all wait for normalcy to bring us back our sanity, the financially disadvantaged people on the streets are fighting both the pandemic and hunger. 

KhaanaChahiye.com

In a scenario like so, a number of social groups have come forward to help in whatever way they can. One of the worst hit cities is Mumbai, where 5 lakh migrant workers, the homeless and underprivileged residents of slums and chawls, waiting endlessly for normalcy to return. KhaanaChahiye.com, an initiative by is cooking food and delivering them to those in dire need, every single day.

“khaanachahiye.com” that was launched in the city of Mumbai on March 29th, is one of its kind people-driven movements that has been running hall and hearty by the people coming from all across. It is that classic example of solidarity where people from all backgrounds, cultural and social has come together to ensure that every mouth is fed.

Brains behind KhaanaChahiye
Top : Pathik Muni, Ruben Mascarenhas. Below: Munaf Kapadia, Shishir Joshi

How does KhannaChahiye.com work

What’s different you ask? KhaanaChahiye.com has built a capacity of preparing over a whopping 50000+ meals on a daily basis by activating the closed kitchens on several Mumbai routes. Pathik Muni, who has been particularly invested in the mission says, “ We crowdsource demand on hunger pockets and then map it to supply-side by activating closed kitchens. Our partner NGO “Project Mumbai” with reach to the relevant stake holders in Government departments helps us facilitate permissions to activate these closed Kitchens with a turn around of 24 hours. Parallelly we raise funds to map the demand.”

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Emergency funds sent to 250 families

Areas of food distribution in Mumbai

The food that is prepared is not just hygienic but also fits the calorie count that is sufficient for a person to get him through the day. Every meal consists of daal-rice, aloo-sabzi, chole rotis, veg pulav etc.

KhaanaChahiye.com

KhaanaChahiye.com has a volunteer-driven collective drive in various areas of Mumbai where people in large numbers have come forward to contribute in the many ways possible. So far the initiative has covered the Bandra to Dahisar route on Western Express Highway, Sion to CST and underprivileged pockets between Mankurd to Kurla on Eastern Express Highway, Juhu to Dahisar on Linking road, a cluster of 1100 labor camps near Mumbai Central and a part of Dharavi Slums.

If you want to volunteer in Mumbai kindly reach out to [email protected]haanachahiye.com

Food distribution areas  in Mumbai by KhaanaChahiye.com

  1. To beggars & homeless
    • below the flyovers between Bandra to Dahisar on Western Express Highway,
    • between Juhu to Dahisar on Link road
    • below the flyovers between Ghatkopar to CST
    • under privileged pockets between Mankurd to Kurla.on Eastern Express Highway,
  2. To labour camps
    • a cluster of 1100 labour camp near Mumbai Central
    • a cluster of 3000 labour camp near Govandi
    • a cluster of 2000 labour camp near Mahul
    • a cluster of 750 labour camp in Colaba
  3. Parts of Dharavi Slums towards Cotton Green.
  4. Over 5000 meals in labour camps at various location identified and provided by the Assistant Commissioner,
  5. Serving food to over 5000 meals in Worli and Bandra on request of the local MLA and Corporator.

Immense demand of food in next 10 days

The intent of the movement is to continue the drive of feeding the needy in these difficult times at least until the lockdown is lifted by the government. However, as the days are proceeding, khaanachahiye.com initiative has identified more and more hunger pockets as a result of which the demand for food is just rising since the time it started. To give a perspective of the recently emerged roadblock, Pathik says, “Nine days back, we started with 1200 meals and we are already catering a demand of 40,000+ as of today. We have corporate donors for most of our requirement, but as the demand for food is rising, we are now looking to feed 5000 people in next 10 days, which turns out to be 1,00,000 meals. Therefore we need to now raise a sum of Rs 25,00,000/- which is huge and we really need the support of more people.”

KhaanaChahiye.com

To raise the funds, khaanachahiye.com initiative has come together with Efforts For Good and The Logical Indian to share this concern with our community members because as a citizen-driven movement, the khaanachahiye.com initiative needs more and more people to come forward and a set a sum aside to keep the initiative going in its full glory so that there are no impediments coming in the way of feeding every mouth in these difficult times. Additionally, one can also contribute by sharing the word with friends and families. COVID 19 is difficult for all, the least we can do is to contribute so that the struggle to cope up with the pandemic does not add up to the struggle to cope up with hunger as well.

Website: https://www.khaanachahiye.com ; FacebookInstagram , Twitter

If you’re an institution, donor, supply partner, the press who would like to partner with KhaanaChahiye.com, shoot a mail at [email protected]

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It's not how much we give
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- Mother Theresa Quote
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