The sudden announcement of a stringent lockdown and reports of rising coronavirus cases in Mumbai and an atmosphere of dread created by these developments sent 30-year-old Suryakant Abhimanyu Phadke into a tizzy. He began to have sleepless nights worrying about contracting COVID-19 and passing it onto his parents or child.
He became paranoid about sanitising his hands multiple times a day. At the smallest sign of what he feared was a symptom, he popped pills and went in for steam inhalation. He was an asthma patient and, being a researcher, he was aware of associated risks from co-morbidities. Finally, he decided to take tele-counselling from a non-governmental organisation (NGO) called Sarthak. The diagnosis: pandemic-induced health anxiety.
The World Health Organisation (WHO) has warned that the constant fear, worry, uncertainties and stressors during the COVID-19 outbreak could lead to long-term consequences in communities, families and vulnerable individuals. Add to it the loss of livelihood, migration and economic collapse, a large-scale mental health problem is brewing in India, not just among those who contract the virus but also those who live in perpetual fear of it.
As Mumbai became a hotspot and COVID infections spiralled around him in Chembur, Phadke decided to his family to Navi Mumbai. He poured his life’s savings into securing and setting up a new home. Staring at a future without a financial safety net triggered a fresh wave of anxiety. Work was anyway at a standstill because of the strict lockdown restrictions.
As luck would have it, his brother-in-law Vivek Kamble developed COVID symptoms and when Phadke accompanied him to the hospital, he too contracted the virus. On July 22, when the other family members got themselves tested, seven of them were found to be infected and they had to be immediately hospitalised.
“I was feeling like there was a thick plate pressuring my chest and also needles poking my chest,” he said. While his condition deteriorated, the excellent care he received at the hospital helped calm his nerves. He was discharged after a week, but his brother-in-law went into a coma and was put on a ventilator for 18 days. They were on the verge of giving up hope when his condition improved and he bounced back, said Phadke. His lungs, however, had suffered 95 per cent damage and it would take at least a year for him to get back to normal life.
Two months after being declared “recovered”, the family is still struggling with post-COVID effects. Said Phadke: “My sister’s cough is persistent. The pain in my legs is immense and I can’t climb stairs without getting out of breath. A few days ago, I was rushed to the local clinic as I felt discomfort in my chest. I have developed an itch and skin rashes all over my body, maybe because of the medicines consumed. My brother-in-law’s business is collapsing as he is too scared to step out and cannot stand for more than 10 minutes continuously.”
The lingering mental and physical impacts of COVID can be life-altering for some patients and health experts are still trying to understand the full gamut of the illness. Due to the stigma around COVID and mental health in India, there is not enough discussion on dealing with health anxieties.
Peer group support
In the absence of institutional support to deal with the physical and mental symptoms, some recovering patients connected with one another on social media and are sharing coping mechanisms. “Peer groups seem like an excellent approach to offer and receive social support and tips on how to manage these symptoms,” said Dr Vikram Patel, the Pershing Square Professor of Global Health and Wellcome Trust Principal Research Fellow, Department of Global Health and Social Medicine, Harvard Medical School.
The WHO has said that there are stressors specific to the COVID-19 outbreak. These include the fear of risk of getting infected and infecting others, especially when the transmission mode is not clear. The fear gets exacerbated by the lack of adequate knowledge about the disease, rumours and misinformation, which are rampant in India.
Abdul Kalam Azad, a community worker, was admitted to a hospital in Barpeta, Assam, when he tested positive for COVID-19. He narrated an incident at the hosptial of how an elderly couple in his ward were in denial of COVID. “When the man’s condition deteriorated, his wife pleaded with the staff to release them. She kept saying that they did not have COVID and it was some other illness,” he said.
The flip side of this denial is that common symptoms for fever can be mistaken for COVID-19 and lead to fear of being infected.
Dr Vikram Patel said: “There are a number of case reports of persons recovering from COVID who experience emotional distress, including symptoms of traumatic distress. The reasons are unclear and could vary between individuals; these experiences may be similar to the post-viral psychiatric syndromes observed for other infections which are believed to be caused by the immune reactions in response to the infection, or because of the social stigma attached to COVID or the fear of reinfection.”
Lack of information and knowledge
While Phadke and his family were welcomed back to their colony in Panvel with cakes, in many parts of the country, families are battling stigma and rejection by communities. Not receiving adequate support could possibly lead to anger and aggression against the government, frontline workers and family members, says the WHO. In the absence of information transparency, there could also be mistrust of information provided by the government and other authorities.
Talking about his experience in the Barpeta hospital, Abdul Kalam Azad said: “We have failed to reach COVID-related information to people. There has been a lot of noise around thaali bajao but the actual work has not been done. People still do not know the importance of masks, sanitisation and hygiene. The media, State and Central governments have failed in this endeavour. Misinformation is not limited to one political party. Playing politics continues even in these unprecedented times. While it is true that not everyone suffers equally, for the vulnerable, elderly and people with comorbidities it can be dangerous.”
While the rising number of COVID cases causes stress, transparency helps people prepare for the situation. “If you have the proper data, you are aware and can prepare for any contingency. But when you see that the government is suppressing data, it fills you with more dread,” Abdul Kalam Azad said.
Recently, the Indian government declared that it did not have the data for the number of casualties in the migration of labourers during the lockdown. Solicitor General Tushar Mehta told the Supreme Court that migration took place because of the fake news published on YouTube by the news anchor Vinod Dua, who has 10 lakh followers. Several journalists and activists have documented the long walk of the migrants because of the drying up of food and livelihood resources in cities. The World Bank has said that at least 50,000 to 60,000 people moved from urban centres to rural areas within the span of a few days. The sudden announcement of complete lockdown left thousands stranded and without the means to reach a safe place. So when the government denies such findings or, worse, blames it on “fake news”, it creates mistrust, as stated by the WHO.
Azad was engaged in relief distribution when he got exposed to the virus. He was aware that he might be vulnerable but the experience of quarantine was scary. He realised that he was trying to handle a problem of which he had no knowledge. “I was aware of risks but who knows what other complications could arise later. So I decided to get admitted.” Once in the hospital, he felt relieved that he was in safe hands but seeing serious patients there was traumatic. Some of the cries of patients continue to haunt him.
After the discharge from the hospital, he is taking care of the post-COVID effects on him without any institutional support. “The public health-care hospitals are anyway overburdened and even if they wanted to, I think it is impossible for them to take care of each and every patient,” he said.
Dr Amar Jesani, who works on the ethical aspects of health care, pointed to structural issues with India’s health-care system in dealing with the pandemic in an efficient way as it was heavily dominated by the private sector. “Injustice is inbuilt into the system. Unlike developed countries, India does not have universal access to health care. In the United Kingdom, every family is empanelled by a doctor. In India, the ‘family doctor’ concept has long been abolished and we can’t expect tertiary-care physicians to do a follow-up on each and every patient. Continued care after discharge has to be done through primary care.”
A large portion of the population, especially workers in the informal sector, have no protection from any government scheme for post-COVID treatment, he said.
Palliative care
The Mehac Foundation in Kerala advocates the use of palliative care in dealing with the complex and ethical decision-making and self-care strategy during COVID-19. In an article in the Indian Journal of Palliative Care , Rao S.R., Spruijt O., Sunder P., Daniel S., Chittazhathu R.K., Nair S. et al write: “The unprecedented efforts at mitigating the disease, the socioeconomic consequences, the inadequacies of the health care systems, and the race for cure have dominated the national and global psyche. Less attention has been paid to the efforts to manage and mitigate the effects of the pandemic on patient suffering, mental health, and well being. Psychological factors influence how individuals cope with the disease, their adaptation to loss, and adherence to public health measures.”
Palliative care, in which the fundamental principle is the total care of the person and which seeks to alleviate suffering by focussing on the physical and the psycho-socio-spiritual domains, should be an integral part of service in COVID-19. This is even more necessary in regions where healthcare systems are already overburdened, difficult to access, or unaffordable for many, according to the article.
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