State of Mind

What Critics of “Prolonged Grief Disorder” Are Missing

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Photo illustration by Slate. Illustration by seamartini/iStock/Getty Images Plus.

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I was a senior in college studying psychology when my boyfriend was murdered. In my shocked state of grief, I couldn’t focus on schoolwork and asked for extensions on papers and projects. One professor said I’d get over the loss quickly since the romance was new.

A friend snorted when I told her about the professor, telling me, “She’s probably got a theory that level of trauma correlates directly with the amount of time spent in a relationship. Right now, she’s drawing a graph on the quantity of distress you should be feeling.” Later, another professor told me the opposite. She thought the loss might be worse because so much possibility was cut off.

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Since then, I’ve wondered: How long was I allowed to grieve the tragic death of the first man I loved? Worse yet, back then I wondered whether my grief was even valid.

A psychologist for 30 years now, I talk often with patients and students about how we measure the merits of grief. How do we decide who deserves to mourn and what that should look like? How long should grief last? Now my field has something of an answer. A new diagnostic category—prolonged grief disorder—was adopted recently into the official psychiatric diagnostic handbook, DSM 5-TR. To meet criteria for the disorder, a grief response must interfere with a person’s functioning for more than a year and be characterized by strong yearning for the deceased, as well as at least three of eight psychological states (disbelief, intense emotional pain, meaninglessness, loneliness, avoidance of reminders, numbness, lack of engagement, and identity disruption).

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This diagnosis, which comes after decades of research, has been controversial. Some worry the diagnosis represents an attempt to pathologize grief. And it’s true that there’s no clear timeline on mourning. Typically, we can return our attention back to the present from an intense focus on the past somewhere over the course of six to 18 months following the death of a loved one. Though we might continue to long for the person we’ve lost, eventually we can re-engage with our lives.

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But a small, though significant, portion of people cannot, and this takes a toll. Researchers have found that people who meet the criteria for the newly established prolonged grief disorder are at greater risk of poor physical health, lower quality of life, and even suicide. For these reasons, there are real advantages to including this syndrome in psychiatry’s diagnostic system. We need tools that help identify who may need specialized treatment. Inclusion in the DSM 5-TR also expands access to health care by allowing for insurance coverage for psychotherapy.

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At the same time, critics are correct that we need to take care not to pathologize bereavement. As a young woman, I wasn’t helped by a therapist who assumed I would have been over the murder a year later. I wasn’t. But now I wonder: Did I need to be diagnosed with a disorder? At first, I thought it was natural that I was still grieving. I felt even more isolated when people implied otherwise. Diagnostic labels can add to those feelings of stigma and lead people to view themselves as abnormal. But they don’t always have this effect. Many survivors of trauma find that a diagnosis of post-traumatic stress disorder validates suffering and points toward pathways for healing. (As a survivor of a loved one’s violent death, I had symptoms of both disorders.) This new diagnosis for grief may offer a similar opportunity.

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The emotional markers of the syndrome—persistent longing and emotional pain such as sadness, anger, disbelief, guilt or regret—are common responses to loss. Many of us who have lost someone we love may always experience some degree of these feelings, even if we do move forward in life. But there’s been less attention paid to another criterion of prolonged grief disorder: “Duration of bereavement exceeds expected social, cultural or religious expectations and norms.” By definition, then, being diagnosed with the disorder doesn’t pathologize “normal” grieving, because it’s focused on the abnormal.

This does, however, create a challenge: How do we define those expectations and norms? We have many unspoken beliefs in our culture about grief that converge to construct a hierarchy, leaving many who mourn at the bottom. Often, we think that the closer someone is to a person who dies, the harder or more significant the loss. If you lose the person to whom you’re married, you get a new label. Once a spouse, now you’re a widow or widower. But what if you were someone’s fiance? We don’t expect that to be as difficult. There’s no external signifier to identify what’s changed inside. If your boyfriend or girlfriend has died, that should be easier to manage. An ex-spouse, even easier. In fact, a large number of bereavement studies are based only on spouses. We know much less about other grief trajectories, yet we make judgments all the time about who gets to feel what.

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What’s more, our culture instantiates these assumptions. Many employers, for instance, allow bereavement leave only for immediate family. I was entitled to two days off from my job when my father died but none after the death of my best friend, even though she was more family to me than almost anyone. Ironically, I could have used more time off after she passed, because her death was unexpected and ugly. My father’s was peaceful and didn’t surprise me. Why not let employees decide for themselves what they need? Our implicit equations about grief hold no room for context—what the deceased means to the bereaved or the circumstances surrounding the death. On occasion, I’ve even caught myself making these judgments. When a young man I treated in therapy sobbed on my sofa for his pet who had died a decade before, I learned a lot about the power of love for one’s dog. When we grieve outside these cultural lines, our suffering may deepen from others’ absence of understanding.

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We should consider whether our cultural assumptions and practices about grief contribute to the need for this new diagnosis. When death happens, compassion for the bereaved gets sliced up like a pie, and people are served pieces sized from these formulas. Popular perspectives on grief don’t account for densities of hope, desire, and longing. Sometimes we judge people who don’t measure up in flat-line formulas as wanting attention. Or worse yet, we view them as liars. A woman whose boyfriend dies in a car wreck tells everyone he had just proposed but they hadn’t told anyone yet and we think: Really? Maybe she’s just saying that so she can be called his fiance, so her grief can be recognized. But who are we to judge when people want as much compassion as they can find? Even if the woman in that scenario is lying, she probably does so because we as a ́culture have such stingy ideas about grief. If we had more empathy for these feelings, perhaps we’d see less disorder.

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Many religions and non-Western cultures observe annual rituals on the death anniversaries of loved ones. In Judaism, there’s a Yahrzeit; in Catholicism, an anniversary Mass; Hinduism has Shradh; Vietnam, Ngay Gio. These traditions allow for a periodic, communal sharing of grief that may be felt privately all year round. With these rituals, people honor their loved ones and grief every year for the rest of their lives. Secular, Western culture makes no space for this kind of recurrent immersion in sadness and reflection. We expect people to move on, especially if we have judged their proximity to the person not close enough, the relationship not important enough, or the mourner too needy and weak.

As we recognize with a new diagnostic label how suffering from grief can thwart our lives, we also need to examine the assumptions we make that erase the many faces of mourning. I’ve reclaimed my own, as I finally accepted and honored my feelings about the horrible loss I suffered. I may not have needed a diagnosis, but I would have been helped by a therapist who had an understanding of the complexities of traumatic grief.  I continued on with my life and peace has mixed in with my pain. But that pain does not go away, and I know I’m not alone in that way.

State of Mind is a partnership of Slate and Arizona State University that offers a practical look at our mental health system—and how to make it better.

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