“I keep feeling like I should have taken better care of her,” says Spoorthi*, when she speaks about her grandmother, who passed away due to COVID-19 on May 11. “She survived cancer and chemotherapy. We thought she would get through this too. How did it happen that one virus entered her body and now she’s gone forever? We feel like we failed her, even though I know it doesn’t make sense.”
Spoorthi was quite close to her grandmother – growing up with working parents, she and her sibling would often only have her company in the house. “Even if I was alone, she was always there. When I moved out, she would play Carvaan (an audio player with pre-loaded old songs) at our Mumbai home in the evening, and I would play retro songs, here in Bengaluru, and we would get on a video call,” the 22-year-old reminisces.
When her family contracted COVID-19 in the last week of April, Spoorthi rushed home to Mumbai. Spoorthi and her family do not know how her grandmother contracted the infection. Spoorthi’s father blames himself, as he was still going to office on alternate days. Spoorthi wonders if it was her – because her grandmother, unlike others in her family, tested positive for the virus after she had come to Mumbai. While Spoorthi had already recovered from COVID-19 in December last year and did not get reinfected in April, she was the one who took her father to get him admitted to the COVID ward.
“Everyone else was quarantined. I wonder if I was the carrier of the virus that got my grandmother unwell. Sometimes, I feel that I should have died instead of her,” Spoorthi says.
Around two months later, Spoorthi and her family have gone back to their routines, albeit with a void. She is back in Bengaluru, and her father continues going to work in Mumbai, with all proper precautions as before. What is common for both is the guilt they continue to carry after the 84-year-old’s death. “She did not suffer, which is a small solace. After my grandmother, there have been other COVID-related deaths in the family, which have also distracted us. But we aren’t rid of thoughts like what more we could have done to save her. Her lungs were weak because of chemo, and the doctor was telling us to be prepared because she was not responding to treatment. But how did we survive when she died?” Spoorthi asks, her voice choked.
Survivor’s guilt – feeling remorse for having survived a catastrophic event when others did not – is becoming common in the pandemic. The term has roots in the Holocaust, and was reportedly first identified in the 1960s. Just three years ago, Eva Lavi, the youngest living Holocaust survivor among those saved by Oskar Schindler, a German industrialist on whom the film Schindler’s List is based, said that she continues to feel guilty for having survived, though she was only two when the second world war broke out.
Paras Sharma, director of The Alternative Story, an organisation providing mental health services on a sliding scale, notes that survivor’s guilt is often a part of traumatic grief, which is different from normal grief. And the trauma that the pandemic has inflicted – on individuals, who have suffered personal losses such as Spoorthi, as well as collectively, on populations – is tremendous. Growing research shows that COVID-19 is a traumatic stressor event, causing PTSD-like symptoms among people, even among some people who had not been directly exposed to the virus.
“Survivor’s guilt happens when there is a traumatic experience, such as a car accident. We are increasingly noticing this among our clients, presenting in the form of feelings of not having done enough, guilt of surviving, and the helplessness, in addition to the trauma, of losing someone. In some cases, people who have not gone through a personal loss are also experiencing this seeing death and suffering around them,” Paras tells TNM.
Dr Abhishek ML, Research Psychiatrist, Center for Brain Research at Indian Institute of Sciences, Bengaluru, points out that the context in which loss has been experienced is an important factor when someone has survivor’s guilt. “An unexpected loss can trigger this. Feeling guilt and grief 4-6 weeks after suffering a loss is usually normal, and then it starts subsiding,” he says.
However, there is hardly anything normal about living in a pandemic that is so isolating by nature. This is exacerbated by the failure of the state to prevent suffering and deaths of scores of people, especially during the second wave of infections, in an overwhelmed and overburdened healthcare system.
Biraj Swain knows this all too well. The senior international development professional lost her brother, Biplab, on May 4, 2021, just 20 days after he celebrated his 48th birthday. “I feel tremendous rage at the profiteering labs that showed negative when he was tested between April 24 and April 29.” She also admits that she has been finding it easier to focus on her anger rather than her guilt – it has been fueling her through the tedious paperwork, formalities, and the additional responsibility of Biplab’s wife and his 13-year-old son in the aftermath of Biplab’s demise. “No civilised society, no welfare state should put its citizens through something like this,” Biraj seethes.
Biraj tested positive for the coronavirus on April 27. She and her sister-in-law were the first to show symptoms. Biplab, who had diabetes, was taking care of them until May 1, when he had trouble breathing. The next day, he and his wife both got admitted to a private hospital where their family doctor worked. On the evening of May 3, the doctor asked Biraj to arrange for eight vials of Remdesivir. “I felt quite scared then, because this meant he was doing quite badly. But I reached out to people I knew, who put out social media calls. By 4 am, the Remdesivir was confirmed, and I felt like the whole universe had come together for my brother. But at 4.55 am, the ICU duty doctor said they could not save him,” Biraj says.
Biplab Swain, Biraj's brother
Overnight, Biraj found herself the eldest in the family, having lost her parents in the last few years. Though she says she prefers holding on to anger to get through this difficult time, when her head hits the pillow at the end of a day, she cannot help but be overwhelmed by grief and guilt.
“I feel guilty for not asking the family doctor to start him on preventative medication when all of us had tested positive and he was asymptomatic. I feel guilty that he did not test positive first, before us, and we could have taken care of him instead. I feel rage and guilt at myself for not insisting he go to the municipality hospital, where he could perhaps have gotten better care. I despise myself for not seeing the signs, for not being able to save him despite the contacts I had,” Biraj says, her voice heavy with grief and tears.
This, even though Biraj was herself struggling with COVID-19 when Biplab passed away, and had to be admitted to a municipal hospital herself after his death. However, guilt is often not written away by reason. “Essentially, guilt comes from wanting to stand in for someone’s suffering, but neither can we stand in for someone’s pain nor can someone take our place. The helplessness of this feeling is immense,” Paras explains.
Biraj, who used to live in Delhi, is staying with her sister-in-law and nephew in Cuttack, Odisha, for now. The 44-year-old says that both she – who was quite spiritual – and her sister-in-law – who prayed regularly – have lost their faith after Biplab died. “I tried trauma counselling, but they told me to lessen my rage. I know it is how I am coping right now, but my rage is legitimate – at the failure of the society, of the system, and state. I feel I can channel it into getting some justice for his death,” says Biraj, who has also written to the authorities for capping diagnostic tests like D-Dimer to prevent labs from profiteering at the expense of people in distress.
Like Biraj, Brinelle D’Souza, a faculty member at TISS, Mumbai, channeled her feelings of guilt at surviving a disease that took her father into her prayer, and mobilising resources for people in need. Everyone at her home tested positive for the coronavirus in early May. And on May 13, her 79-year-old father passed away from COVID-19 at the hospital.
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Noel D'Souza, Brinelle's father
On the same day that he died, Brinelle found herself telling her children that she loved them, to take care of each other, and share whatever assets she had equally, because her oxygen had dropped to 80-85. She had to be hospitalised. “I wasn’t sure I would survive,” the 52-year-old tells TNM. “COVID unfolds in such an unpredictable manner. All of papa’s vitals were fine, but he did not survive. I felt very sad. My children are 26 and 22 – quite young. How would losing a mother affect them?”
After she was discharged, like Spoorthi and Biraj, Brinelle also wondered if she should have admitted her father to the hospital earlier. “But I felt most guilty for surviving when so many much younger people around me were dying. I felt I have lived a satisfactory, fulfilled life in academia and as an activist. My father too, was almost 80, and lived a full life. But when someone who is 24 dies, there is so much life they have yet to experience… For 15-20 days, it affected me very badly when I saw deaths of younger people, of women who left behind children, and when people died simply because they couldn’t get help in time, due to the callous system. I felt guilty for surviving, for getting access to a private hospital when so many people, who had paid so much money and even sold assets and jewellery to access healthcare, still didn’t survive.”
Brinelle coped by channelling her distress into offering and mobilising support for those in need through her existing network and in her capacity, and into her faith and prayer.
Like Brinelle, Paras has noted many others expressing guilt for being relatively unscathed by the pandemic, or for having more access to healthcare and vaccines compared to others. While the pandemic has seen many heartening stories of people stepping up, or coming together to help those in need, it cannot compensate for the state’s responsibility of providing equitable access to all. “A lot of people expressed feeling guilty for not being able to find hospital beds, or, for being able to find one for someone because they had access or contacts. Many people in corporate sectors are feeling quite disillusioned with their jobs and their profiteering nature. Several have ended up volunteering to provide support and relief as a way of channelling their anxiety and guilt,” Paras observes.
The pandemic has also made it harder for us to do things which could otherwise help a person make peace with loss. “You cannot even be there for your loved one in their last moments. You cannot hold their hand, allay their fears about death,” says Brinelle. She and Spoorthi both last saw their loved ones alive over a video call facilitated by the respective doctors which did not last over a couple of minutes. “But she was always sedated, and would stir and somewhat respond to our voice,” Spoorthi says about her grandmother. This, coupled with how COVID-19 has made last rites per religious or cultural customs more difficult due to safety norms, provides hardly any opportunity to prepare for death or say goodbye.
While therapeutic intervention can be helpful, emotional first aid and support from others around also play a role in how a person copes. Survivor’s guilt, for instance, can manifest as self-harm, self-sabotaging behaviour such as not being careful about safety, and losing interest in self-care and preservation. One hypothesis, Paras explains, is that these are ways of punishing oneself.
Emotional first aid at such a time should be to, first, listen empathetically without interruption, says Dr Ahishek. “Let them cry if they want. Initially, don’t give a rational argument for them to stop feeling this way. This doesn’t mean you have to agree with them if they say ‘I am responsible for their death’. You have to neither accept nor refute this, just listen.”
But people often do not know what to say, and their attempt at offering comfort may end up doing the opposite. Biraj remembers when an uncle told her that her brother’s demise was related to past-life sins. “Here, I am feeling that his death has left me orphaned, and I am haunted by memories of wearing his hand-me-downs, and using his dog-eared school textbooks with his notes. And then people will say all kinds of nonsense in the name of offering comfort,” she says.
The situation is complicated by the fact that the pandemic has made social and cultural practices of grieving difficult. “Earlier, people would visit, sit with you, share your grief in some way. I don’t think my uncle could have said what he did if he was face to face with me,” says Biraj.
Paras adds that we must also acknowledge that not all of us are going through the same thing – first-hand trauma (of contracting the infection or losing a loved one) is different from vicarious trauma (such as from learning about someone else’s loss or from social media and news). “In the case of vicarious trauma, one should remember that their trauma, as well as that of the person going through it first hand, is valid. Maintain that distinction, and don’t minimise or maximise your own suffering or another’s.”
He adds, “For someone who has experienced loss first hand, they and others around them should know that there is no fixed trajectory or timeline that they need to follow. People should also watch out for symptoms in routines and not normalise them – it is not OK for you to not eat or sleep properly over a prolonged period. People feel guilty when they are unable to move forward, or even when they do. The social expectations around how and when one should grieve make things difficult. But there is no one way or time to grieve or cope.”
*Name changed
If you are aware of anyone facing mental health issues or feeling suicidal, please provide help. Here are some helpline numbers of suicide-prevention organisations that can offer emotional support to individuals and families.
Tamil Nadu
State health department's suicide helpline: 104
Sneha Suicide Prevention Centre - 044-24640050 (listed as the sole suicide prevention helpline in Tamil Nadu)
Andhra Pradesh
Life Suicide Prevention: 78930 78930
Roshni: 9166202000, 9127848584
Karnataka
Sahai (24-hour): 080 65000111, 080 65000222
Kerala
Maithri: 0484 2540530
Chaithram: 0484 2361161
Both are 24-hour helpline numbers.
Telangana
State government's suicide prevention (tollfree): 104
Roshni: 040 66202000, 6620200
SEVA: 09441778290, 040 27504682 (between 9 am and 7 pm
Aasara offers support to individuals and families during an emotional crisis, for those dealing with mental health issues and suicidal ideation, and to those undergoing trauma after the suicide of a loved one.
24x7 Helpline: 9820466726
Click here for working helplines across India.