MyStory: “Two Months After I Joined IIT For My PhD I Was Diagnosed With TB”

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A person suffering from Tuberculosis (TB) not only battles the ‘Mycobacterium tuberculosis’ bacteria inside his lungs but also from the stigma attached to the disease. It weakens the patients in many different ways in their fight against the dreaded disease.  

My fight with TB was also filled with stigma. I joined IIT Kharagpur for my PhD in January 2015. Two months later, in March 2015, I was diagnosed with TB. I had to take sick leave from March 2015 that eventually lasted till June 2016. Initially, I did not respond well to medication. Further tests revealed that I had multidrug-resistant TB (MDR TB). This meant that the type of TB I had was resistant to two or more of the antitubercular medication I was taking.

About a year after the intensive phase of my treatment, I felt better and applied for readmission to IIT in July 2016. A prerequisite for rejoining was that my faculty members had to verify my application. With the formalities completed, I resumed my education, but I felt that something was amiss. 

My guide indicated that he did not want his work to suffer on account of my illness. I also heard from a senior colleague that my guide had said that I would spread the disease like an ‘infested animal’. I was disheartened at being subjected to this indignity by my supposed mentor.

However, my primary concern was defeating TB, so I didn’t dwell on it. Today, as I reflect on it, I realise the reasons behind the stigma were ignorance as well as fear.

Even among the educated, there are misconceptions about TB. People think all forms of TB are contagious. Others believe the patient is infectious for the entire length of the treatment. Some even believe that TB spreads through touch. This breeds the fear of contracting the illness.

As we know, people stigmatise and discriminate when they fear. I felt the impact of the stigma on two levels – in my professional life and my personal life.

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Professionally, the reluctance of my supervisor to mentor me and his discouragement affected me. I could not decide whether I should wait for the IIT authorities to tell me to leave or drop out. That decision was made for me by luck when I found out that my CSIR grant application was never processed. 

This meant that I would have to pay for my education. Given the expenditure on my treatment, this was unaffordable for me. This was the final nail in the coffin. I was forced to drop out and could not go back to completing my PhD.

What I faced was not technically illegal. I was discouraged from doing my PhD, but it was still a form of stigma. The external stigma I faced led to depression and isolation. 

Eventually, I realised I had to fight. The treatment for TB is difficult, requiring strict compliance and the management of side effects, and these demands resolve. I began motivating myself. I began following a proper diet and completing my treatment to ensure I could recover. I also turned to books as they transported me to other worlds and helped with my isolation. I also focused on reviving my old relationships.

Gradually, things improved. I could not proceed on my desired career path, but I am an educator now. I constantly realise that I have a role to play in shaping young minds. 

Workplace stigma has tangible consequences. It affects an individual’s career, financial opportunities and their right to work with dignity. So what can we do to address this stigma? 

First, we need to sensitise people by educating them about TB, and the impact stigma has on patients.

Another measure is group counselling involving the patient, the employer and the immediate supervisor. Informal versions of these sessions happen in the workplace in the context of illnesses like cancer. Why should it be any different for TB? 

The goal of this session would be to ensure that the patient is in a supportive environment. 

Finally, at a systemic level, there needs to be a workplace policy on stigma mitigation and a mechanism where the patients can anonymously register their concerns about stigma at the workplace.

A person’s career or job is often their calling and a provider of financial security. Workplace stigma creates a hostile work environment, affecting a person’s ability to do their job and their financial security. Financial insecurity and stigma make it harder for the patient to fight TB both in terms of means and motivation. Therefore, addressing stigma in the workplace is critical to patient well-being and recovery but also to their right to work with dignity.

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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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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
but how much love we put into giving.
- Mother Theresa Quote
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