From the early days of the HIV epidemic to the current coronavirus crisis, a major challenge around infectious diseases has been dealing with the deep-seated stigma around affected populations.
Research shows that at the height of the HIV crisis, stigma and misinformation were among key factors that prevented people from seeking testing and care until it was too late. Community narratives and patients’ accounts during other health crises, including tuberculosis and the more recent Severe Acute Respiratory Syndrome, show similar trends.
People often do not like to talk about disease-related stigma as it exposes their collective prejudices. Some even doubt that such prejudices exist. But the truth is that it is only natural to be fearful and anxious.
Across the world, Covid-19 has sparked unwarranted behaviour towards health workers, infected persons and their families, certain ethnicities, and anyone with even a sliver of connection to the disease.
Who is doing the stigmatising? You and I, our families, neighbours, community members, and even the state. Remember those cases where some patients were literally stamped with a “Covid-19 positive” mark? As India and the rest of the world comes together to fight the global pandemic, it is time we address our prejudices.
Side effects of stigma
Stigma faced by affected populations is not a “soft” issue. Previous experiences with tuberculosis, HIV and Severe Acute Respiratory Syndrome patients show that it impacts testing and care, disease transmission and the population’s mental health.
People who test positive often become fearful of seeking help or even discussing symptoms. They can trust neither the health response systems not the community – putting themselves and others at risk, and increasing the rate of transmission.
To understand the ways in which this can incite violence and push people towards self-harm, one need not look further than Himachal Pradesh, where Mohammad Dilshad, a 37-year-old resident of Una district, hung himself after being consistently taunted and harassed by his community. This, despite the fact that Dilshad had tested negative for Covid-19.
The virus didn’t kill him, but stigma got the job done.
We are all fed by fear, internalised racism and misinformation. And this will heighten with the growing number of cases, rising mortality rate and limited testing facilities.
How to combat it
We are confronted with a crisis that we don’t know enough about. To rise above it, the first thing to do is arm ourselves with facts about the disease and how to care for it medically, physically and emotionally.
In India, there is currently a lack of clear and effective communication and a knowledge-based stigma reduction strategy that can translate into public education, community engagement, and trust in the health care system. What we need is more layered and less panicked communication.
First, we should acknowledge that the virus will not going away any time soon. Any strategy needs to be long term, broad based and transparent, with key public figures who can help the state communicate this on a daily basis. Unless the state can help people understand the disease itself, telling them not to be anxious about it is futile. Further, it needs to drive home the point that stigmatising people and communities will not help.
Second, we need to move from the language of fear and paranoia to one of empathy. We can stop using terms such as “infected” and “carrier” and switch to “affected” or “acquired.” This reminds people that patients and those at risk are people just like us.
It time for the government to build a multilingual, multipronged influencer strategies. From Tik Tok stars to religious leaders, everyone can help promote empathy and self-care. These voices can amplify important messages and create a sense of responsibility.
Law enforcement agencies should also maintain low tolerance towards prejudice-driven attacks. Moreover, first responders should be trained to cope with stigma, as dealing with negative attitudes can be detrimental for their mental health while carrying out their duties.
A public awareness campaign around breaking stereotypes that harm social cohesion and empathy is the need of the hour. We have already seen sections of mainstream media and social media demonising certain communities and ethnicities. This is not just unethical, but also has a direct impact on disease control and people’s lives.
Finally, we need to highlight – as was done with tuberculosis and HIV – stories of resilience and recovery, as much as we do stories of distress. This is not to say that criticism should not be welcomed, but to remind people that the virus can be overcome and most people will recover.
Remember: a vaccine or cure will take time, but there is no rationale that says we cannot channel our social connectedness, networks, and humanity to generate informed, scientific, empathetic responses in this crisis. If we don’t, stigma and misinformation, not the virus, may be our undoing.
Chapal Mehra is a public health specialist who works extensively in the areas of infectious diseases like tuberculosis and HIV.