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