“Profound sense of guilt”: Why some Covid-19 survivors are still suffering

Photos of people who died from Covid-19 are projected onto the Brooklyn Bridge in New York City as part of a memorial held on March 14. | Noam Galai/Getty Images

Survivor guilt during the pandemic may be pervasive, but it’s hard to detect, leaving many struggling in silence.

Lauren Nichols almost didn’t survive the Covid-19 pandemic. But it wasn’t the virus itself that nearly killed her. The 33-year-old’s struggle with severe symptoms after testing positive for the virus, combined with an overwhelming sense of guilt for still being alive while so many others were dying, nearly drove her to suicide at the end of last March.

“I had to stop myself [from suicide] multiple times,” she told Vox earlier this month. “The survivor’s guilt ... I felt for being alive, for taking medical care away from someone else, definitely played into that. I still feel that to this day.”

Since becoming involved in a support group last April — and talking with mental health professionals — she has been able to better manage her guilt. She now sees that Covid-19 survival and recovery is “Russian roulette. It doesn’t matter if you were perfectly healthy or had a chronic illness. ... There’s nothing more I could have done or [not] done,” she says. “Once you come to this realization that you have no control over it, it’s a little bit easier to take.”

Survivor guilt is not a formally diagnosable condition (which also means definitions and interpretations can vary). But psychiatrists say it can affect a subset of people who survive a deadly event — whether a war or a natural disaster — or a serious illness, like cancer.

These people “feel this profound sense of guilt,” says Nadine Kaslow, a professor of psychiatry and behavioral sciences at Emory School of Medicine and the director of the Atlanta Trauma Alliance. “That often goes with other things, like feeling numb, not having an interest in life, social withdrawal, questioning their worth and value, and feeling like they did something wrong.”

It can also have physical manifestations, from insomnia and nightmares to headaches and stomachaches, she says. “It’s like they’re being torn apart inside,” Kaslow says. In extreme cases, like Nichols’s, it can even play into severe depression, post-traumatic stress disorder, and suicidality.

About 10 to 20 percent of people who live through a traumatic event like a serious accident or illness have persisting mental health issues, which can include survivor guilt, notes Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona who studies loss and bereavement. She expects those rates to be similar for the pandemic, although “it’s still early days,” she says. “We don’t have a lot of data yet.”

More than 29 million people in the US have had confirmed cases of Covid-19, with more than 1.8 million of those hospitalized. More than half a million have died. Even if just a fraction of people experience survivor guilt, that’s hundreds of thousands, if not millions, of people.

It’s also possible for someone who didn’t go through the experience themselves — for instance, someone who never had Covid-19 — to be saddled with this emotional burden. “You don’t have to have experienced the terrible thing itself,” says Abigail Nathanson, a psychotherapist who specializes in grief and chronic illness and a lecturer at the New York University Silver School of Social Work. “You have to have a sense of vulnerability to it: ‘This could have been me.’”

Given the enormity of this pandemic, “there’s a lot of people whose very real pain is getting missed,” Nathanson says. From her conversations as a palliative social worker, she finds that “people are experiencing [this guilt] but not recognizing it. This is getting lumped into one distress reaction to Covid-19. It’s not being labeled and talked about.”

Those suffering from survivor guilt might not be able to put a finger on what, precisely, they’re feeling. Which can make it hard, too, to get help — even if that help is just talking about it with a trusted friend, or a relative stranger who has gone through something similar.

Here is what we know and what we are learning about coronavirus survivor guilt.

What we know about survivor guilt, and how it might be playing out in the pandemic

Psychologists and other researchers who have been studying survivor guilt for decades say the term rose to prominence after the Holocaust. Since then, it has been extensively documented among active-duty combat veterans; survivors of events like the 9/11 terrorist attacks, mass shootings, or serious illness; and many others.

The everyday feeling of guilt — and the effort to avoid it — can serve an important social function. For example, “it keeps us taking care of each other,” Nathanson says.

But after a major event that has killed people, those who escaped death might wonder why they lived but others didn’t. “It’s pretty typical to have these thoughts cross your mind,” O’Connor says.

These passing feelings can be one way to try to make sense of the ultimate randomness of death. “As painful as it is, it can serve the function of helping people feel they are gathering a sense of control,” O’Connor says. However, “If someone is not functioning well, it could be because this rumination has complicated the process of returning to a meaningful life.”

In these cases, a survivor might obsess over the idea that things should have turned out differently or that they should have done something differently. O’Connor pegs this as the “would-have, should-have, could-have: If things had gone differently, this death would never have happened,” she says. But the reality is that there are many questions around death that simply have no answer.

And clearly, survivor guilt doesn’t affect everyone who lives through Covid-19 or another deadly threat. So what makes people at a higher risk for experiencing it?

Someone’s social tendencies can make it more likely; people who are prone to submit their needs to those of others can be at higher risk for experiencing it, Nathanson says. A sequence of events can also trigger more intense survivor guilt. For example, some of those affected learned they unknowingly infected relatives who died of the disease. This can set off more guilt and a feeling that they are responsible for the death. (Experts caution that survivors typically had no way of knowing they were infectious and shouldn’t blame themselves based on information they only received after the fact.)

Some working on the front lines of the Covid-19 response, such as intensive care nurses and doctors, have also reported battling survivor guilt after seeing so many deaths day after day after day. Other pandemic-related forms of guilt are also circulating. For example, many health care workers have been feeling a gnawing emotion deemed sideline guilt.

Nathanson, who has worked in health care for 15 years, got sick with Covid-19 in New York City the second week of March 2020. “I had really bad symptoms for a week or two, and low-grade problems — brain fog, sore joints, limited lung capacity — for close to six months,” she says, but “my experience was I sat on the couch while everyone else was out there, helping people. ... I felt this huge sense of powerlessness and guilt,” she says.

Her privileged position accentuated this guilt. She could continue to work remotely and provide for herself. “I felt guilty because I had all of these privileges — and couldn’t really help people. There are many people who have died for not having that privilege.”

Even those who have not had Covid-19 themselves might be experiencing some level of ongoing guilt, whether for being able to keep their job or get an early vaccine, or being privileged enough to be able to stay safe from the virus.

Like other aspects of the pandemic, these struggles are probably not distributed evenly. “We know minoritized communities are bearing the brunt of bereavement” from the coronavirus, O’Connor says. With the loss of disproportionately more family members and friends and substantially higher case numbers in communities of color, the amount of survivor guilt is also likely correspondingly higher there.

Many aspects of the pandemic also make coping with these feelings even more difficult. For example, while guilt can spur the urge to take care of others, mandatory distancing and greater social isolation can make finding ways to do that harder.

And without social connections, “it’s hard to find your equilibrium again,” Nathanson explains. “When you’re feeling guilty and also feeling isolated,” people tend to fare even worse. On top of that, she says, add the stark social justice issues that have been underscored by the pandemic’s tolls — “who doesn’t have access to food and a safe place to live, who has to go to work without protection” — and some survivors can feel even more intense guilt, she says.

For those who are dealing with long Covid, as Nichols is, survivor guilt can be even more intense. There’s a layering effect, she says: “We have this guilt on top of guilt: ‘I’m sick. But other people are dying.’” She points out, too, that because of ongoing symptoms, “we are constantly reminded that we are still here, and we feel guilty for it.” From her conversations with other coronavirus long-haulers, she has also noticed that patients who need ongoing help from family or other caretakers seem to be battling even more intense guilt, not just from being alive but also from feeling like a burden on others.

For those who got sick during a surge when medical resources were scarce, like Nichols did, many survivors might also find the ongoing guilt still makes it difficult for them to access care. Nichols says “over a hundred times, I have woken up in in the middle of the night gasping for air, feeling like I’m choking. And I feel like I can’t call my doctor because I can’t take my doctor’s time away from [other] patients in need.”

Another Covid long-hauler and advocate, Fiona Lowenstein, echoed the additional struggles with guilt that those with ongoing symptoms face. “In my experience, it makes you feel guilty about expressing any concern about your own condition, or even the fact that you’re in this situation, because you can’t get away from the idea that you’re just lucky to be alive,” she wrote in an email to Vox.

How people can cope with survivor guilt, and the double-edged sword of taking action

For Nichols, her survivor guilt quickly became what she describes as “survivor’s pressure.”

“I feel a deep, deep pressure to use my experience to help bring awareness for those who haven’t been fortunate enough to survive this virus,” says Nichols. She now volunteers her time outside of work as an administrator for a coronavirus advocacy group, Body Politic Covid-19 Support Group. “I have devoted almost every waking moment to try to help people, as a way to help myself not feel as bad about surviving this virus and have meaning to what I’m going through, so it’s not wasted.”

Courtesy of Lauren Nichols

Lauren Nichols hiking — previously one of her favorite hobbies — before she got sick with Covid-19 in March 2020. The illness has left her with ongoing symptoms and persistent guilt.

But this is also a daily struggle for her. The once-athletic young woman, who used to walk six miles every day to and from her job managing international defense transportation logistics, passed the one-year anniversary of her first symptoms on March 10. Although many of her intense respiratory and gastrointestinal symptoms have resolved, she still has regular migraines, pain, brain fog, and occasional seizures, and physical activities like standing up to take a shower can send her to bed with exhaustion for days. Even writing an email can be a struggle.

So this advocacy work also exhausts her.

Finding this sort of outlet for survivor guilt can be a double-edged sword, O’Connor agrees. “Doing is a great way to get out of your head,” she notes. But if it gets in the way of recovery or addressing grief, it can become its own challenge.

What should someone do if they feel they might be experiencing survivor guilt? O’Connor recommends talking with someone, whether a friend, support group, faith leader, or psychologist. Ideally, she says, it should be someone who understands that the goal is not to find answers about why something happened, but to eventually find a way to accept the unanswerable.

She describes a conversation with one father she worked with whose son died by suicide. The dad had told her that all of the would-haves, could-haves, and should-haves had become a wall for him. “You can’t get through that wall to the other side,” he told her. “You have to find a way around it.”

For those who find themselves — or others — really struggling, they can reach out for help confidentially 24/7 to the treatment and referral helpline run by the Substance Abuse and Mental Health Services Administration, or the National Suicide Prevention Lifeline.

From her experience, Nichols reports that she was reluctant to share her internal struggles with guilt. “I was [initially] very private with my survivor’s remorse, and that led me to wanting to kill myself,” she says. But talking with others who had had similar experiences and finding a support group literally saved her life, she says.

So just having people around and willing to listen can go a long way in helping those battling survivor guilt, Nichols says. She urges friends and family to “let them know: ‘I am here for you. I believe you.’ ... Reassure that person that they are important, they are needed in this world, and that they have no reason to think they could have done anything differently.”

The bottom line is that understanding and coping — and supporting people — with survivor guilt can be tricky, and in some cases, it can be a life-or-death situation in itself. “There’s so much we don’t know, so much research that has not been done,” Nathanson says.