India is home to the highest number of tuberculosis cases, and currently is also the fourth-worst Covid-19 hit country. Despite this, awareness about these diseases remains poor, and fear and stigma widespread. The rise of Covid-19 has been accompanied with stigma against patients, families and health personnel. Such trends are similar and extreme in TB cases.
Misinformation leads to discrimination within communities, workplaces and educational institutions, further leading to social isolation and neglect. With workplaces now having opened up post the lockdown, how do we address stigma around Covid-19-affected individuals? Can we learn from TB?
One of us, Diptendu, was diagnosed with multiple drug-resistant or MDR TB while studying at the Indian Institute of Technology-Kharagpur. After returning from a medical leave, he found that his supervisor, a scientist, was reluctant to work with him because he was under treatment – even though it was for non-infectious TB. Facing discrimination from a mentor discouraged and destabilised him completely. This, coupled with his financial inability to continue his higher education, forced Diptendu to give up on his dream of a PhD and he eventually withdrew. In the blink of an eye, all that he had worked for stood erased.
We don’t realise it, but stigma aids the spread of infectious diseases such as TB and Covid-19. Many patients can lose their jobs, which often makes it difficult for them to seek care or complete their treatment. Alongside the financial burden, there is emotional and mental distress as well as loss of self-confidence. It makes you feel incapable, frightened, anxious and often incomplete. Some worry if they will ever be hired again.
However, there are some positive experiences too. The other one of us, Himanshu, received constructive support from his employers and colleagues while struggling with TB. His employer asked the right questions and involved other stakeholders within the organisation to create a supportive environment. He was granted a three-month paid sabbatical. When Himanshu presented a doctor’s certificate when he became non-infectious, he was asked to come back to work. He had flexibility in terms of working hours and was allowed emergency leave.
Thus, he was able to work and finance his treatment. Besides, his colleagues were supportive too. Each of his team members worked a few extra hours so that he could go home on time and his workload was shared. They took him out for dinners and he never faced any stigma. All this and continuing work gave him the strength that was needed to fight the disease.
Stigma is not self-protection – it’s a choice, and a bad one. So, what can we do? In such cases, awareness and sensitisation at the workplace can go a long way. Companies must also institute workplace policies to deal with such stigma, by recognising that diseases such as TB and Covid-19 are and will remain widespread for a while. Addressing this calls for stricter HR policies that penalise such discrimination.
But this is not enough. Every educational institution and workplace must necessarily conduct trainings sessions to build better understanding of the diseases and the impact of stigma on patients. These policies also need to make provisions for counselling patients on dealing with these challenges, and ensure a redressal mechanism so patients can register complaints.
Moreover, such policies need to have legal backing and be supported by broader, anti-discrimination legislations – along the lines of the legislation for HIV. India needs to do its bit in the fight stigma and make workplaces safe and inclusive for those fighting infectious diseases like TB and Covid-19. We need society to understand that no one chooses to get sick, but we can choose whether we stigmatise them or not.
Diptendu Bhattacharya is an MDR-TB Survivor, educationist and Fellow associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related comorbidities.
Himanshu Patel is an MDR-TB Survivor, operations analyst and is a Survivors Against TB Fellow.