The Weekend That I graduated from law school, my mother told me that she had amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, a neurological disease for which there is currently no cure. As I recalled in a recent essay, I spent the following year watching as her muscles atrophied until she died.
A year and a half later, my father was diagnosed with cancer. He successfully completed one round of chemotherapy, but then, less than two years later, the cancer returned, killing him within months. He died on Aug. 12, my mother’s birthday.
After my parents died, I wanted to focus on work, friends, and dating, like most other people in their 20s and 30s, but I couldn’t. I struggled with intense emotional sadness and anxiety. I constantly longed to see my parents again — even if just to give them one hug — and I struggled to accept that they were gone for good.
As of this March, the feelings that I experienced could now be categorized under a new mental health disorder. That month, the American Psychiatric Association officially added Prolonged Grief Disorder, or PGD, to the latest edition of its Diagnostic and Statistical Manual of Mental Disorders, otherwise known as the DSM, a widely used guide for psychiatric diagnoses.
Since the 1990s, some mental health experts have argued that intense or prolonged grief should be categorized as a distinct mental health disorder and treated differently from other disorders like depression. In 2018, the World Health Organization approved PGD as an official diagnosis in its International Classification of Diseases, applicable when “persistent and pervasive grief response” is present six months or more after a person’s bereavement. (The ICD definition — similar to the recent DSM addition — allowed exceptions to that timeframe based on the individual’s expected “social, cultural or religious norms.”) In 2019, researchers came together to agree on a precise set of symptoms for PGD, also sometimes referred to as complicated grief disorder, for the DSM.
The APA describes PGD as occurring when a bereaved person experiences a persistent longing for the deceased person, intense emotional pain, along with a preoccupation with thoughts and memories of the deceased. According to the DSM, PGD “causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.” In order to be diagnosed with PGD, a person must also experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month. For children, the symptoms can be potentially diagnosed as PGD after six months.
This new definition and terminology risks pathologizing common grief reactions, and it will likely create an inaccurate societal expectation about what grief should look like.
After all, I have experienced many of the symptoms associated with PGD. I definitely had “difficulty moving on with life,” described as a symptom of PGD in an APA press release. And my experience is not an anomaly. “I meet people every day who might meet a criteria for prolonged grief,” said Joanne Cacciatore, a professor in the School of Social Work at Arizona State University and founder of the MISS Foundation, an organization that provides support to families struggling with traumatic grief.
“There is no smoking gun here as to when grief is pathological,” Jerome Wakefield, a professor of social work and bioethics at New York University, told me. If you look at the criteria, he says, “the symptoms are all normal symptoms of acute grief,” referring to the intense feelings of loss that occur after a loved one’s death. The essence of the PGD diagnosis, says Wakefield, is that if grief goes on too long, it’s no longer on a normal trajectory toward being resolved, and “something pathological is happening.”
This arbitrary one year time limit on grief sets up dangerous societal expectations. Since my parents died, I’ve felt like I’ve been fighting against a belief that grief is a short, finite process after which one magically, and fairly suddenly, returns to their prior self. Months after my parents’ parting, family members stopped checking in. When my sadness lingered, employers struggled to understand that my grief was not limited to days or weeks. Friends struggled to understand that my grief continued to impact me, and still does, years after my parents died.
Very little about my experience was unusual. Only 36 percent of people in a recent study, carried out by Cacciatore and colleagues, said that they received good or excellent support when grieving. Respondents said that feeling judged, feeling abandoned, and feeling avoided by family and friends were some of the ways that they didn’t feel emotionally supported. Crucially, social supports — or the lack thereof — play a part in shaping our capacity to cope with grief, Cacciatore told me in an email. In one 2015 study, social constraints, such as having limited opportunities to share thoughts and feelings in a supportive context, were found to be associated with more depressive symptoms.
As my own social support system waned in the wake of my parents’ deaths, I began to feel ashamed of my persistent grief and of my inability to “move on.” I worried that something was wrong with me because I grappled with those experiences and missed my parents.
Now I worry that — by perpetuating false ideas about how one should grieve — the new definition of PGD will potentially result in even less social support for bereaved individuals when they really need it. As Wakefield put it to me, the idea that overly intense grief is pathological invites social regulation of a process that are, “for many people, they report some of the most meaningful processes they ever go through in their life.”
Advocates of recognizing PGD, which by some estimates affects about 10 percent of bereaved people, say the diagnosis will allow mental health professionals to better identify individuals who need help. It could potentially make it easier for people to receive insurance reimbursement for mental health issues associated with bereavement. But those potential positives won’t erase the negative societal ripple effects.
In a 2002 essay, Cheryl Strayed wrote these hauntingly prophetic words:
“If, as a culture, we don’t bear witness to grief, the burden of loss is placed entirely upon the bereaved, while the rest of us avert our eyes and wait for those in mourning to stop being sad, to let go, to move on, to cheer up. And if they don’t — if they have loved too deeply, if they do wake each morning thinking, I cannot continue to live — well, then we pathologize their pain; we call their suffering a disease.”
Two decades later, Strayed’s prose rings true. To better support bereaved individuals, we must bear witness to the reality of grief, not pathologize it.
It has been almost 12 years since my mother passed and eight years since I lost my dad. I felt intense sadness and longing for them when I walked down the aisle alone at my wedding, when I found out I was pregnant with my first child, when I bought my house, after the birth of my second child, and on so many ordinary days in between.
And although the intense periods of sadness have subsided, or more accurately ebbed and flowed, they still occur. Time, therapy and surrounding myself with a supportive community has helped. But the biggest help to me was understanding that despite the societal expectations that exist, there is not one way to grieve.
Katie C. Reilly is a freelance writer and attorney based in Oakland, California. Her writing primarily focuses on women’s health, mental health, and parenting, and has appeared in The Washington Post, The New York Times Magazine, Elle Magazine, and Newsweek, among other publications.
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