When my best friend, “Kay,” was 24, her partner died. For years, I struggled to understand what happened to her in the aftermath. Kay had been dating “DF” for a year and a half. He was a few decades older with a chronic illness, and for months she’d wondered whether or not their relationship had a future. But she liked him too much to break up with him.
Then, one day, he went to the hospital for severe appendicitis, and 11 days later he was gone. Overnight, Kay changed. We expected that. She was grieving. But months, then years passed, and Kay’s grief kept flowing from her in great waves. During the first five months after DF’s death, she could not go a day without sobbing. It was a year before she could handle getting out of bed, and get herself to therapy. It would be nearly four years before she was up to doing full-time work, six before I heard her laugh. For a long time, I wondered how grief had knocked her so completely out of orbit.
Then I learned that the American Psychiatric Association (APA) had added a new diagnosis to its latest revised edition of the Diagnostic Statistical Manual of Mental Health Disorders (DSM-5-TR): prolonged grief disorder.
Prolonged grief disorder (PGD) is defined as an “intense yearning or longing for the deceased . . . and preoccupation with thoughts or memories of the deceased.” It’s accompanied by at least three of eight other symptoms, including loss of meaning or purpose, loss of sense of self, emotional numbness, and extreme loneliness. Also, the duration of the person’s bereavement far exceeds expected norms.
“Prolonged grief disorder is when the early, intense, and all-encompassing grief that takes over your whole life keeps taking over your whole life,” says Dr. M. Katherine Shear, professor of psychiatry and founding director of the Center for Complicated Grief at Columbia University School of Social Work. Dr. Shear notes that prolonged grief is not the anniversary effect, where holidays or significant dates might continue to be painful, or the pangs you might experience when you’re reminded of your loss; but a continuation of the sharp, incessant, and nearly unbearable pain that characterizes the first few months of grief, making one unable to function.
An estimated 4% to 10% of people have prolonged grief. Preliminary research suggests that when people who meet the criteria for prolonged grief disorder see a picture of the deceased’s face, the reward regions of their brain light up. However, the data are nascent.
The addition of the diagnosis to the DSM has unleashed a debate that goes back to the origin of psychiatry: Where should psychiatry draw the line between disorder and normal human experience? At what point does a diagnosis pathologize uncomfortable emotions, and at what point are we denying people access to resources, treatment, and understanding?
Proponents believe that a diagnosis could save people like Kay from years of suffering and dysfunction. When a diagnosis is listed in the DSM, it opens the door for research on treatments, including medication; and it can change society’s understanding of people who suffer from grief. Detractors, however, believe that the diagnosis’ potential to change how we understand grief is exactly the issue. A prolonged grief diagnosis stigmatizes an already vulnerable population, they maintain, and creates a definition of “normal” for an element of the human condition that should never be held to a definition of normal.
How disorders become diagnoses
The DSM first appeared in 1952, in the wake of World War II, as psychiatrists realized they needed more ways to treat people struggling with the stress of daily life. The first two editions were heavily influenced by psychoanalysis—the search for what is repressed by the conscious mind. For the third edition, released during the 1980s, there was a shift toward basing the DSM’s diagnoses in data, with the hope of unlocking biological reasons behind mental illness, which continues to this day.
In 2010, Dr. Shear, and other researchers, including Holly Prigerson, a professor of geriatrics at Weill Cornell School of Medicine, met with a workgroup for the fifth DSM to propose including prolonged grief disorder as a new diagnosis—a move that resulted in backlash from psychiatrists and the public alike. (Critics included Dr. Allen Frances, a professor of psychiatry, who was chair of the task force that oversaw the revision of the fourth DSM edition.) The workgroup ultimately decided that there wasn’t enough of a consensus for a formal diagnosis, and prolonged grief was listed as an emerging disorder.
Prior to 2013, when the fifth edition of the DSM was released, the DSM was revised every decade or so by gathering together a large group of experts. However, the advent of the internet meant that, instead of waiting a decade for updates, the DSM could be revised more quickly. The APA switched to a model in which proposals for a new diagnosis could be submitted, and in 2018 grief researchers proposed prolonged grief as a new diagnosis.
The revision committee for the DSM put the proposal through a stringent two-year review process before deciding to include prolonged grief disorder. So far, PGD is the first and only diagnosis to have passed all of the approval steps of the DSM’s new process. Dr. Paul Appelbaum, chair of the steering committee overseeing revisions to the fifth edition of the DSM, noted other diagnoses that came close have been sent back for additional data.
The Case for Prolonged Grief Disorder
The idea that there’s a type of grief that’s disordered is not new. Freud proposed that there was normal grief, in which the mourner gradually adapts to their loss, and an unhealthy grief in which the mourner remains stuck in their pain and becomes at risk of suicide. Other psychiatrists built upon his work, including Dr. Erich Lindemann, who specialized in bereavement, further defining the physical symptoms of prolonged grief, including shortness of breath, a hollowing feeling in the stomach, and the sense of choking.
In the early 1990s, Prigerson, then a researcher studying later-life mood disorders, noticed that while bereaved patients’ depression responded to antidepressants, their symptoms of grief did not recede. Now director of the Center for Research on End of Life Care at Weill Cornell, Prigerson began studying grief and found that for most people, the most intense symptoms of grief abate after six months. However, for a small group of people, the intensity of their grief continues on, and they have trouble functioning.
During the same time, Dr. Shear was developing a treatment program for prolonged grief that could help sufferers in 16 weeks, and by 2005 she was seeing effective results. More recently, naltrexone, a medication currently used to treat addiction, is going through clinical trials as a potential treatment for PGD.
The DSM diagnosis means that clinicians will be able to bill insurers for prolonged grief. It also opens the door for researchers to conduct further study for treatments, and for people like Kay, and her friends and family, to understand why she’d suffered for so long.
Prolonged grief disorder isn’t the first time the DSM has included a controversial diagnosis, and the general public has needed time to adjust. Prigerson commented via email: “We interviewed hundreds of bereaved people who met criteria for prolonged grief disorder and asked them explicitly about how they would feel about a diagnosis. . . . [O]ver 90% thought they would feel better, felt their family would better appreciate their struggle, and were comforted by the hope that if clinicians better understood their pain, they might be better equipped to treat it. . . .”
Kay has never been officially diagnosed with prolonged grief disorder, but when I told her about the diagnosis, she echoed Prigerson’s sentiments. “Knowing that other people have gone through this, and get through this, and that I’m not crazy for taking a long time would have been a comfort,” she said.
The Case Against Diagnosis
However, critics point out that the diagnosis has several downsides. First, they worry that the diagnosis further stigmatizes people who grieve, in a society that already has trouble coping with grief. Joanne Cacciatore, a professor at Arizona State University who works with people suffering from traumatic grief—for example, people who have lost their children to murder. She fiercely resents the diagnosis, pointing out that her patients are not disordered. Rather, they are normal human beings reacting to abnormal events.
“To call grief a disorder at one year feels like a gross overstep of a system that has no control over what goes on in the field of mental health practice or what goes in the world,” she says.
Jerome Wakefield, a professor of social work and psychiatry at New York University, worries that the criteria for prolonged grief aren’t crisp enough and don’t carve out exceptions for particularly traumatic grief, such as the kind experienced by Cacciatore’s patients, or individual circumstances, such as an older person who loses a life-long partner but has very little community support.
Furthermore, Wakefield points out, diagnosing prolonged grief is dangerous because it sets a precedent for fitting grief into a mold, limiting the enormous variability in how people grieve. If we have a formal diagnosis for grief, what happens to people whose symptoms last longer than a year? Will employers or families pressure them to get treatment or go on medication?
“What about other negative emotions, such as anger, or passionate indignation over past injustice?” he says. “Will that be seen as disordered?”
And while the DSM has included other controversial diagnoses, it’s also been flat-out wrong before, such as including homosexuality disorder in its first two editions. Cacciatore worries that, in practice, the prolonged grief diagnosis will translate to clinicians who are uncomfortable with grief or lack proper training over diagnosing prolonged grief disorder and further compounding the griever’s pain. She worries about naltrexone disrupting all social bonds, not just the griever’s connection to the departed.
I asked Wakefield what people like my friend Kay should do. He was sympathetic to her plight and noted that the DSM has other categories of unspecified disorders. People like Kay who want help could still be treated using an unspecified label while society escaped the downsides of the diagnosis.
Cacciatore points out that there’s a greater problem. We’re so fundamentally uncomfortable with grief, that the only way we can bear to help people who struggle with it for a period of time deemed too long is to say they are disordered. “It’s easy to tell people how to grieve when it’s not your person who died,” she says.
It’s unclear what’s next for prolonged grief disorder. The DSM has stringent criteria for adding a new diagnosis and requires the same level of data to modify the diagnosis, Dr. Appelbaum points out. While there are provisions to delete a diagnosis in the DSM, they require substantial evidence that the diagnosis is invalid, not clinically useful, or doesn’t meet the criteria for a disorder. There have been diagnoses that have been removed or modified; the most recent revision of the DSM had over 70 modifications to diagnoses’ criteria, while Asperger’s syndrome was removed from the fifth DSM and instead combined with autism.
Dr. Shear is grateful that the controversy is sparking more conversation about grief. “The most important thing that’s happened because of this and COVID is that people are talking about grief, and in our culture they don’t like to,” she says. “The people who are railing against this diagnosis are telling the world what they’re experiencing. . . . That’s a really good thing. If we start honoring grief as a culture and a community, that’s just a good thing.”
It’s been a decade since DF’s death, and today Kay is working full time and just bought a house with a new partner, but she still has trouble remembering the first two years after DF’s death. She feels lucky that she was able to weather four years of unemployment, but overall she’s in favor of people having more choices.
“[Grief] felt like a natural process I had to go through, but having medication available means more choices,” Kay says. “Some people might over-prescribe, but overall it’s better to have choices.” She adds: “How long you grieve someone doesn’t say anything about how much you care about them . . . I’m grateful only a small part of the population goes through grief like this because it was terrible.”