Prolonged grief disorder was recently added to the Diagnostic and Statistical Manual of Mental Disorders, just as experts are predicting a coming wave of severe bereavement.
A year after her mother died from Covid, Fiana Garza Tulip held a small memorial service on a Texas beach that her family had visited countless times when she was a child. As she and her brother dropped a wreath of yellow roses into the waves, she expected to cry. But the tears did not come. She felt only guilt for appearing to be unmoved, heartless even.
Garza Tulip, 41, had endured so many losses — two miscarriages, and the virus taking her mother, uncle and great-aunt. It also debilitated her father. "I think the one thing I miss the most is feeling anything," she said recently of life after the series of tragedies.
She had thought the lack of emotion meant she was not grieving, unaware that numbness can be a symptom of grief. When a therapist diagnosed her with prolonged grief disorder, or P.G.D., a newly recognised condition, Garza Tulip, who lives in New Jersey, was relieved that what she suffered had a name. Recently added to the upcoming revision of the Diagnostic and Statistical Manual of Mental Disorders, or D.S.M., it's a syndrome in which people feel stuck in an endless cycle of mourning that can last for years or even decades, severely impairing their daily life, relationships and job performance.
"This is about a lost relationship that was central to who you are," said Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine and a longtime researcher into grief. "Now this person is gone, it's 'I don't know who I am anymore.'"
Symptoms of P.G.D. can include emotional numbness; intense loneliness; avoidance of reminders the person is not there; feeling that life is meaningless; difficulty with reintegration into life; extreme emotional pain, sorrow or anger; a sense of disbelief about the death; and a feeling that a part of oneself has died.
In the immediate aftermath, or "acute" phase of a death, such feelings are considered normal. But when three or more of these symptoms persist nearly every day for a year after the loss in adults, or for six months in children and adolescents, grief counsellors say it can be a worrisome sign of prolonged grief disorder.
The disorder, which was previously known as complicated grief and persistent complex bereavement disorder, isn't new. But before it was listed in the D.S.M. as a condition for further study. Preliminary studies suggest that it affects around 7 percent of those in mourning, though estimates vary. With the coronavirus claiming nearly 800,000 lives so far in the United States alone, grief counsellors are concerned about the ongoing fallout. Each Covid death is projected to leave a ring of nine bereaved: That's roughly seven million grieving parents, children, siblings, grandparents and spouses. And the losses cast a shadow over many more.
Dr. Vivian Pender, president of the American Psychiatric Association, which publishes the D.S.M., said the prevalence of prolonged grief disorder may increase because of the sheer magnitude of Covid deaths. It is not yet clear whether having a loved one die from Covid will increase one's risk of developing P.G.D. Still, Pender said: "I think the pandemic has made losing someone particularly worse. The usual loss and grieving process has been disrupted."
'There's no playbook for grieving'
Wherever Lia Catanzaro goes, she can't escape the reminders of the disease that took away her father, Paul, in June 2020: the masks, the spaced out restaurant tables, the heated vaccine debates. She has a physical response to it all: her chest tightens, she starts to freeze and she has to remind herself to breathe. The 35-year-old social media manager from Cranston, R.I., left her job and deactivated her social media accounts, and has been diagnosed with post-traumatic stress disorder and complicated grief.
"There's the number of how many people who have been lost to Covid, but not a lot of focus on how hellish it is in the aftermath," she said. "There's no playbook, no advice from other generations."
Like so many others, Catanzaro and Garza Tulip couldn't be with their parents in their last moments. Grief counsellors say that Covid deaths may be as traumatic as losing someone suddenly and violently, like to a suicide, murder or fatal car crash. "They can't get to that person as they are dying; they can't hold that person," said Dr. Ted Rynearson, clinical professor of psychiatry at the University of Washington and medical director of grief services at Virginia Mason Franciscan Health. "They are often left with an unfinished story."
Having to grieve without the support of others can add to the pain, Prigerson said. She knows this personally. Her mother died after battling Covid, too. It wasn't until eight months later that she could finally hold a memorial service with family, with guitar playing and singing and swaying. After that, she was able to sleep better at night.
Prolonged grief disorder is associated with a greater risk for sleep disorders, depression, drug and alcohol abuse, hospitalisation and suicide attempts. But experts say some interventions may help to lower the risk of developing P.G.D. symptoms.
Robert A. Neimeyer, director of the Portland Institute for Loss and Transition and editor of the journal Death Studies, believes there are conscious actions people can take before suffering a loss that may help to mitigate the grieving process. They include not waiting to tell loved ones how much they mean to you, working to resolve conflicts with family members before serious illness or death, and cultivating a broad circle of support who can draw close when losses occur. "None of these will prevent grief, but they can help us integrate and bear with inevitable losses with greater strength, support and wisdom," he said.
Research released this summer suggests that if social workers can help caregivers acknowledge and prepare for their loved one's impending death, that could help stave off P.G.D. symptoms and other complications of bereavement. Reframing negative thoughts after a loss may help, too, Dr. Prigerson said, such as shifting from a belief that "No one will ever know/love/appreciate me like the deceased person," to "Others may know/love/appreciate me in different ways." Equally important is doing things to enhance a sense of well-being and inner calm, as well as practicing self-care — such as exercise, healthful eating and regular sleep.
In the wake of a death, many people are surprised by the ferocity of grief, and worry that they aren't grieving the right way. "This is one of those things, paradoxically, that can make grief last longer," wrote Dr. Katherine Shear, professor of psychiatry and founding director of the Center for Prolonged Grief at the Columbia School of Social Work, in an email. "So, it's important to accept grief, with its intense emotional pain, and understanding that there is no right way — and also no wrong way — to grieve."
Confronting a 'lack of grief education'
Designating prolonged grief as a new mental disorder isn't something that has universal support. Some experts worry that pathologising grief could lead people to seek treatment needlessly when their symptoms may recede naturally over time. Tashel Bordere, an assistant professor in the department of human development and family science at the University of Missouri, Columbia, who specialises in bereavement, said that the designation of grief as a "mental disorder" could also further stigmatise orphaned Black children, who are among the hardest hit by the pandemic. "The language makes me cringe," Bordere said. "I think what we have is a prolonged lack of grief education."
More than 140,000 children in the United States are estimated to have lost a primary or secondary caregiver to Covid, according to a new modelling study by the Centers for Disease Control and Prevention and other institutions. Of those who lost a primary caregiver, about 65 percent are racial and ethnic minorities. There is less access to resources for these children, Bordere said, and school personnel often don't know how to recognize the signs of a grieving child, who may appear fatigued, distracted, irritable or argumentative.
Gwendell Garrett, 47, has wondered whether her 13-year-old son, Sterling, should get counselling. He seems fine, but was very close to his father, Omar, who died from Covid in March of 2020 at age 42. She thought talking with someone might help her son cope and help prevent any future issues. But when Garrett asked a school counsellor about services for her son, she never heard back. She worries about her 7-year-old daughter, Gianna, too, who keeps dreaming about her daddy.
"It's hard with kids, they process things differently. They seem like happy children, but I can put that face on, too," said Garrett, an elementary school teacher who lives in Slidell, La., and is also struggling after the loss of her husband. She had recently spoken with one of Sterling's teachers, who was unaware of Omar's death. "The school system has no clue who in their system — their employees, their children — has lost someone in their family to this virus. There's nothing going on, no, 'Hey, has your family been affected?'"
What therapeutic help looks like
The Center for Prolonged Grief at Columbia has a list of therapists trained in its 16-session intervention therapy to identify and address prolonged grief; while Weill Cornell Medicine's Center for Research on End-of-Life Care has free online resources, including a grief assessment tool, and exercises on cognitive reframing, coping and socialising.
Because P.G.D. is a new diagnosis, doctors can misidentify the condition as depression. Being able to recognize it, Shear said, is important since the treatments are different. Medication that helps depression doesn't help grief symptoms, like the persistent, pervasive yearning for the deceased; and, she said, neither does therapy that focuses on depression. She hopes the new D.S.M. designation will raise public awareness so that those who need help can get it.
After Garza Tulip began treatment for the disorder, she was sitting in her kitchen with her husband one night, talking about her mother, Isabelle. Pregnant and nearing her due date, she realized her mother wasn't going to be there for the birth. Then she began to sob, and sob and sob.
"It was like a faucet had opened," she said. Yet amid her grief, she felt the kicks of the long-forgotten, too: hope for the future. Just after Thanksgiving, her baby boy, Albie, came into the world. She believes her mom is shining through him. "He was the rainbow we needed," she said.
Written by: Dawn MacKeen
Photographs by: Gabriela Bhaskar
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