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.
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.
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.