Infectious diseases and stigma share a long and problematic relationship – where the former goes, the latter follows. As the COVID-19 cases rise in India, stigma besides other health care challenges will be one of the key obstacles to control this crisis effectively at the community level.
Instances of stigma and discrimination against medical personnel – doctors and health care workers are already common. Those working in aviation, especially on flights that were sent to bring Indians back from COVID-19 affected foreign land met the same fate. This is unfolding, not amongst strangers, but people they know, within housing societies and communities. The stigma associated with COVID-19 is real and here to stay.
This, however, is only the beginning.
As an average Indian is gripped by desperation, panic, and fear, it will only lead to widespread stigma and discrimination against those affected and their families. Along with crafting an infection control strategy, the country urgently needs a stigma mitigation strategy to address COVID-19 related stigma.
Stigma: A possible deterrence in combating coronavirus
Evidence across disease areas, be it HIV, TB or SARS reveals that stigma has a direct impact on seeking tests and care early. It also impacts attitudes towards helping others especially those in our immediate environment. As stigma grows, those affected become fearful to seek testing, or care, or even revealing their symptoms. They are terrified of others within communities finding out about even the possibility of disease. This, obviously, leads to increased suffering and transmission.
In the case of coronavirus, this will likely have a multiplier effect because transmission is easy and paranoia is rising. In short, controlling it will be impossible without addressing stigma. This is critical but also essential as we are asking people to self-identify and test early to stem the flow of transmission.
India has to wage a war against COVID-19 related stigma. Understanding the roots of disease-related stigma is critical here. The fear of the unknown and unfamiliar has throughout history been used to justify the exclusion of those with medical conditions with no cure. Disease-related stigma appears when an uncontrollable or uncertain condition exists – such as an infectious, unexplained and potentially incurable disease. Coronavirus checks out all the boxes. People stigmatise because they feel that stigmatising and excluding somehow reduces risk. Thus, perpetuating such an attitude somehow creates a false sense of distance or empowerment in the face of uncertainty.
At the heart of it, it is the fear of infection and eventual suffering. When our fears have no resolution, stigma helps us channelise our fears and anxieties over the uncertainty in pandemic situations. It allows us to hold attitudes or behaviours to turn the stigmatised person into an “other”.
Here, it is important to remember that stigma is not just fed by fear but also by a lack of credible information and the inability of authoritative social figures in calling it out. Stigma also has political and social roots, when stigmatising behaviour goes unpunished, it legitimises assertion and dominance.
How does stigma affect those affected?
Apart from hiding their disease and symptoms, stigmatising behaviour by others creates self stigma and mental stress and can lead to mental health issues, depression and may even lead to self-harm. Imagine, this for a disease where a large percentage of those affected are likely to recover.
In the long term, stigma also has a dramatic and probably underrecognised effect on the issues such as employment, housing, and access to medical care. We cannot imagine this yet but it will unfold with COVID-19 as well as the crisis deepens. Hence, the stigma will cast a long shadow which may not easily be lifted by the cure.
How do we address the COVID-19 stigma?
For starters, we need to create credible, reliable sources of information at every level. We need to strongly discourage stigmatising language as it is both debilitating and can create allowances for people to discriminate against those who are symptomatic or affected. We need to debunk myths and break down stereotypes that feed fear and misinformation within communities.
The role of the media and imaginative communications is particularly critical here. Baseless rumours, fake news and racial stereotyping feed stigma and need to be called out. We need to create a stigma mitigating public narrative otherwise we will find that more and more people will hide their symptoms and be fearful of seeking testing and care. We need to create a positive narrative too about recovery and hope. It is important to emphasise stories of recovery to lessen paranoia and feeling of impending doom. We need to make the public realise that many people will recover from this virus and seeking care at the soonest is critical.
It is time to create a clear and focussed approach to stigma mitigation for COVID-19, otherwise, we may find cases slipping through the cracks due to stigma. The fight against COVID-19 may soon be a difficult war just because we failed to inform, engage and manage public anxiety and fears. If we don’t act now, stigma, not the virus alone, could be our greatest foe.
Chapal Mehra is a public health specialist who works extensively in the area of infectious diseases such as TB and HIV.