The Covid-19 public health emergency is over, but tales of loss remain. This website offers the bereaved a digital safe space

(CNN) — Four years ago, Jody Settle and his partner toasted over Guinness beers and a takeout meal they had picked up from a normally bustling Irish pub in New York City left deserted by the onset of the Covid-19 pandemic.

It was the last St. Patrick’s Day meal the couple would share. Settle, 58, died from the virus 33 days later, on April 19, 2020, one of nearly 1.2 million people in the United States who have succumbed to Covid-19 since 2020.

Ed Koenig, Settle’s longtime partner, remembers Settle’s peaceful face as he visited him in the hospital for the last time. Willie Nelson’s version of “Always On My Mind” played nearby as Koenig kissed Settle’s forehead through his protective gear.

A year ago, the World Health Organization declared an end to Covid-19 as a global public health emergency. The United States allowed its own public health emergency to expire nearly a week after the WHO’s announcement.

Stay-at-home orders have long ended, and much of society has moved on from the pandemic.

But Covid-19-related grief lingers for millions.

On the fourth anniversary of Settle’s death – and driven by a need to mourn – Koenig wrote about his former partner on the Covid-19 remembrance website WhoWeLost. In part, he shared: “Yes, indeed, you will always be on my mind.”

The website, launched in 2020 in Kentucky and home to around 2,000 published and yet-to-be-published stories, serves as a digital haven for Koenig and hundreds of others. Those still grieving can write about their losses in a comment-free environment without interactions, judgment, internet trolls and the sometimes toxic nature of social media conversations surrounding the virus – including whether Covid-19 is even real, according to the website’s founder, Martha Greenwald.

“It’s their sacred space to say what they need without someone throwing all this cruelty at them,” Greenwald, a poet and former English professor from New Jersey, said of her nonprofit website.

Greenwald, who lives in Louisville, Kentucky, started The WhoWeLost Project for bereaved Kentuckians, inspired by the state’s public health commissioner, who in October 2020 called on state residents to share their Covid-19 concerns with him. The project offers writing prompts and guidance for those looking to share their memories. Greenwald expanded the website nationally after a 2021 story on the website from an NPR affiliate garnered widespread praise.

“I think the need for the site, in a way, is larger because less people are paying attention (to Covid-19),” Greenwald told CNN. “It’s one of the last places that are still paying attention.”

Coping with Covid-19-related grief

Researchers studying the pandemic’s repercussions have found that grieving relatives of Covid-19 victims experienced higher rates of a prolonged grief disorder when compared with pre-pandemic periods.

In general, the disorder, characterized by acute and insistent grief, impacts between 7% and 10% of adults and between 5% and 10% of children, according to the American Psychiatric Association. In a 2023 study, researchers in the United Kingdom found people were more than three times as likely to exhibit prolonged grief disorder symptoms 13 months after losing a loved one during the pandemic than compared with pre-pandemic times.

“There’s this lingering sense that their loved ones and their own grief were never allowed to exist, so it’s very repressed and kind of still simmering under the surface for a lot of them,” Greenwald said of the writers on WhoWeLost.org. “(For) the people whose loved ones died early on during Covid, there were no funerals, so all the stories that could have been told at that wake that didn’t happen. They can write those stories down here.”

New York City resident Wiandy Santiago’s 65-year-old brother Wilmard Santiago died of Covid-19 in April 2020, a week after being placed on a ventilator. The family, limited to 10 funeral attendees standing 6 feet apart, couldn’t hold a service for him until two months after his death.

She says she wasn’t able to mourn her brother in person with family.

“(We) grieved through a Zoom call,” Wiandy Santiago told CNN. “There’s nothing like being able to sit next to your loved one and grieve your brother, your sister, your spouse, your child.”

Her stepson, Alberto Locascio, died of the virus in September 2021, a week before his 40th birthday.

“Unless you went through it, you don’t understand why it doesn’t go away,” she said of what she described as “a complicated grief” in a post on WhoWeLost.org.

As she spoke, her eyes moistened. She says she has often wondered about her big brother’s final thoughts. He died alone in a Bronx hospital without his wife and two sons by his side.

“What was he feeling? Was he scared?” Santiago said amid tears, her voice quivering with the pain of never getting to say goodbye.

She says she’s sought solace in writing about her late relatives through the WhoWeLost project.

Over the past two years, she’s used the site to write poignant stories about the lives of her brother and stepson – like how Wilmard loved photography and the Yankees, or how Locascio was a kind and gentle soul who their family considered their protector. Scrolling Facebook through recent prom photos of Locascio’s son brought a mix of emotions, she recently wrote on the website.

“I was sad for Nicholas who would have loved to have his dad there with him. So happy, yet so sad,” Santiago wrote.

She opens up about her lingering grief in many of the posts.

“I feel that healing comes from writing, releasing those emotions,” she said.

Greenwald agrees. She’s a special adviser for Rituals in the Making, a research project by the anthropology department at George Washington University that has in part examined the ways in which those in mourning adapt when their normal rituals, like funerals, are interrupted.

“Rituals can really help the surviving family and friends to feel that loss is recognized,” said Sarah Wagner, a principal investigator on Rituals in the Making. “When that does not happen, there’s all kinds of ways that mourning stretches on and intensifies, and that’s what we’re seeing with the pandemic.”

A safe place to grieve on their own terms

Before discovering WhoWeLost, Koenig turned to social media for support from others grieving Covid-19-related deaths, but he says problems often arose in these settings as trolls bombarded mourners with horrendous comments.

“Covid isn’t real, they died of something else.” Koenig says that was a typical response in social media posts.

Even as Covid-19 deaths climbed into the tens of thousands during the pandemic, a misinformation-led sector of society, fueled by political polarization, disregarded the virus’s seriousness. Others denied its existence despite evidence from public health experts showing otherwise.

A 2020 YouGov study found 13% of people polled in the US believed the coronavirus, or the virus that causes Covid-19, did not exist. The Poynter Institute’s fact-checking website Politifact labeled claims that denied, downplayed or spread disinformation about Covid-19 as its “lie of the year” in 2020.

Koenig says the most offensive remarks he saw were expletive-filled death wishes hurled toward the LGBTQ+ community.

“All you perverts are going to hell anyway, so what difference does it make?” Koenig recalled reading.

On WhoWeLost.org, those coping with prolonged grief are free to share their experiences away from those negative online conversations, Greenwald says. Many of the comments Greenwald says she has seen have involved shaming victims afflicted by more than one condition or disease at a time.

“If someone posted that their mother died of cancer, they would get the usual ‘sorry for your loss,’ but if they posted that their mother died of Covid, then the comments might be something like, ‘well, didn’t she have cancer?’ or ‘she had a heart problem,’ or ‘she was a smoker,’” Greenwald said.

Even when no one is shaming them about comorbidities or denying Covid-19’s existence, Greenwald says the bereaved may feel no one wants to hear about what they’re going through.

The WhoWeLost project is still listening, Greenwald says.

“I know so many people who will say, ‘my co-workers don’t want to hear about it, or they tiptoe around the subject,’” she said. “We’re still wanting to hear what you have to say even though everybody else wants you to shut up.”

Paige Gavin, a master’s student also working on Rituals in the Making, said of WhoWeLost: “The ability for mourners to reflect on the positiveness of seeing their loved one – not just in their death, but in the life that they lived – I think that’s been one of the benefits alongside having a place to tell that story.”

Wagner described WhoWeLost as a space for the bereaved to memorialize on their own terms.

“Given that there was so much politicization, I think it is an opportunity for people to reflect on how Covid didn’t define their loved one,” Wagner said. “Covid was so polarizing, and yet, it’s a space that doesn’t have to be about Covid at all.”