One month after my mother died, I printed out the MapQuest directions to a therapist’s office that my father urged me to visit. The office was a home office about thirty minutes away in a neighboring town—an alcove attached to a three-story Tudor with landscaped flower beds and a cobblestone staircase. As I pulled up to the curb and parked my car, I saw that the light above the garage door was off, which she—this therapist—had informed me was her way of signaling that a patient had not yet left. I was to wait outside until the light came on, at which point someone would slink from the side door with their head down and shoulders slouched. I didn’t want to be there. I didn’t want to walk to the door.
Even before arriving at the house, I knew that once I stepped into her office, this therapist would likely want me to cry. She would want to see proof that losing my mother had in some way affected my ability to reacclimatize, and that talking with her, a clinical psychologist, would allow me the unencumbered opportunity to explore my grief in a safe environment. However, what most of my therapists failed to understand—at least until I started working with my current one—was that death doesn’t suddenly turn the hourglass and start some thoughtful journey into self-reflection. If anything, losing my mother only made me angry. I felt angry that for the rest of my life, no matter what I accomplished or who I became, psychiatrists would view my problems as directly-connected consequences of having lost my mother at a young age. I resented this. Sometimes my days were stressful or overwhelming for reasons that had nothing to do with grief and everything to do with being a person in the world.
The light above the garage turned off. I got out of the car and walked up the paved driveway toward the house. I knocked twice, then she opened the door.
In an article that ran in The New York Times two years ago, Ellen Barry—a mental health and healthcare reporter—wrote about a then new and unsurprisingly controversial diagnosis: prolonged grief disorder. “The new diagnosis […] was designed to apply to a narrow slice of the population who are incapacitated, pining and ruminating a year after a loss, and unable to return to previous activities.” For some readers, this new diagnosis was welcome validation for their unrelenting psychological or physical symptoms, especially since the diagnosis’s formality allows patients access to previously uninsured medications and treatments. However, several others—both myself and my current therapist were deeply skeptical of the diagnosis, and still are—found prolonged grief disorder to be another way for others to stigmatize individual trauma responses and view them as abnormal or subject to medical intervention. Joseph Chuman, a reader from Hackensack, New Jersey, wrote in his letter to the editor after the article ran: “For the first several months after [my wife’s] death I was consumed by overwhelming emotions. With the passage of time, I was able to regain my normal functioning. I was able to work, to socialize with others and to laugh. But beneath the surface I retain feelings of loneliness, sadness and a certain emptiness.”1
When people think of grief, they might imagine a horizontal line marked by individual experiences that become progressively better over time. On the left-most side is the originating event while on the right side is a cascading list of battled-though, but overcome challenges: “managed to celebrate her birthday without crying” or “finally donated her old clothes and packed away her things.” However this narrative—one that I myself used as a blueprint for much of my grief journey up until recently—falsely pushes the promise that with time, a person will feel healed and unburdened and hopefully more wisened to the world; in essence, a person’s grief, when properly and successfully managed, is something to move through and out of, and not someplace to permanently reside in. This is the most problematic aspect of prolonged grief disorder: this issue of time. Assuming that a person immediately shows signs of grief, then their symptoms, according to doctors and clinicians, ought to resolve themselves in a year and any symptom that extends beyond that is considered prolonged. But how does this diagnosis treat those whose symptoms begin several years later, and what does it mean to return back to one’s usual way of life? Anyone who has experienced grief knows that physiologically, there is no going back.
“So why did you decide to start therapy today?”
This therapist had long, black hair that she braided into a single plait against her back. She seemed kind, but hawkish—her eyes like analytical beads assessing my every fidget or glance away. I wanted to tell her that my father suggested I begin processing what had happened—that perhaps someone like her, a professional, could offer me guidance on how to embark on—
“Your grief journey, correct?” Between our two chairs, she had placed a crocheted tissue box and a wooden bowl of stones. She had spoken for me, just then, as if I had somehow forgotten why I drove thirty minutes to her house. I eyed her, and then the bowl of stones. “You can touch the stones,” she said. “Some patients like holding onto things. They need to use their hands. Go ahead, you can take the bowl.”
“I’m okay, thanks.” She crossed and uncrossed her legs, then scribbled something down onto her legal pad—one of the dozens she kept piled on the desk in the corner, and which must have had my personal details already laid out. She looked up and clicked her pen twice. Our eyes met briefly again, but I looked away. What I really wanted to talk about was how my group of friends had recommended my mother smoke weed in hospice, and that my heart, once it was expanded, could hold compassionate space for every living being and not just for my dead mother. I wanted to talk to her about Prom and about my dress. I wanted to talk about how my boyfriend at the time seldom replied to my text messages, or about how my teachers in school kept urging me to stay home—that any missed assignments wouldn’t count against me—and that their concern felt othering. I wanted to tell her that I hated my part-time job at the pizzeria; I hated the boss, and I hated my coworkers, but I couldn’t say any of that. She wanted me to express sadness for my mother—tears and sobs and screams and emotions—but it would be five years until I recognized how deep my grief had planted its roots. Until then, I continued to excel both in school and in work, never failing to meet a deadline because my grief could never outshine my desire to be the most perfect griever. I wanted others to recognize my resilience and wonder how I managed to keep it together. As far as clinical standards go, my ability to continue with my routines signified healing and growth, but deep down, I knew that I would break eventually.
If the horizontal line starts with the death of my mother and supposedly keeps going—a line marked by exponentially more positive experiences that represent my ability to recover—then this graph should also show an uninterrupted flatline where nothing happened and nothing was felt but where everything solidified into crystalline emotions that I am only now working so hard to break.
Prolonged grief, as it appears in the Diagnostic and Statistical Manual of Mental Health Disorders (DSM), is defined by feelings of emotional numbness, intense emotional pain, identity disruption, and feelings of intense loneliness that “[exceed] expected social, cultural or religious norms and [which are not] better explained by another mental disorder.”2 A prolonged grief reaction, as is further detailed by the American Psychiatric Association (APA), “occurs most of the day, nearly every day for at least a month. The individual experiences clinically significant distress or impairment in social, occupational, or other important areas of functioning.”3 What makes this diagnosis so controversial—and why Barry reported on the issue in the first place—is its inherent pathologizing of a deeply personal yet widely shared human experience: missing someone, and missing them deeply. How do mental health clinicians and psychiatrists distinguish between normal and abnormal grieving behaviors anyway, and why, when patients present symptoms of prolonged physical or emotional distress—would their grief, and not their consequential symptoms, be diagnosed as the issue of concern? It would be like diagnosing someone with their experience rather than the emotions that naturally and organically followed.
Receiving a diagnosis for any illness, whether it be psychological or physical, can be life-changing and wholly transformational. Giving names to sensations or experiences allows a person to take actionable steps toward receiving appropriate care and, at the very least, provides an originating framework from which they can nurture and build upon their personal identities. Only through my own experience of finally receiving an anxiety diagnosis could I start to identify the particular triggers that catalyzed a panic response in me, but never once did I consider that my mother’s death might be the origin of these feelings. The very idea behind prolonged grief suggests that a person’s ability to maneuver through the world after a death—something that is a deeply personal and physiologically altering experience—ought to become standardized. I not only find this dangerous, but also highly presumptuous.
In their book, Bereavement: Reactions, Consequences, and Care, Osterweis, Solomon, and Green explore grief’s longterm symptoms without directly correlating those symptoms to any particular mental disorder. Their study examines stress responses in humans and animals and traces those responses back to an originating event; more simply, is someone who develops increased anxiety or a physical illness after the death of a loved one necessarily suffering from prolonged grief, or could other environmental or extenuating factors also contribute to these changes? In the book chapter, “Toward a Biology of Grieving,” the three argue:
This view is consistent with contemporary stress theory, in which it is postulated that a stressor (x) produces certain transient biological or psychosocial reactions (y) that may (or may not) cumulatively lead to certain health consequences (z). Reactions and consequences may be modified by a number of factors, and the consequences may themselves activate other stressors. In simplified form, the stress model looks like this:4
It is clear that no one, including myself, is arguing that people do not become sick or distressed during mourning; however, understanding that grief compounds already present stressors is key when determining which treatments or medicines to pursue. For clinicians to insinuate that there is a “normal life” which grievers ought to return to—and that a person’s inability to do so might be cause for more deliberate diagnosis—is unhelpful and, in the case that patients might internalize their responses as “bad” or “not good enough,” lethal. And again, this begs the question: what happens if patients never present obvious symptoms of grief? What if they never shake their desire to be perceived as perfect and put together, and can continue working and living in society unfazed? What diagnosis would they get, if any at all?
I only attended three sessions with that first therapist. I didn’t appreciate being made to feel like my anger or my frustrations or my anxieties were direct consequences of my mother’s death when they felt more aligned with simply being a teenager—a teenager who was about to graduate from high school, move several hours away, and break up with the boyfriend who saw her through it all. The danger of prolonged grief disorder, despite it offering potentially helpful avenues for patients and clinicians to explore further treatments, is that it doesn’t account for the hundreds of minute changes and adjustments people experience everyday. It is true that grief, in many ways, permanently alters a person’s psychology, but to diagnose them with a mental disorder that seemingly ignores the vast complexities of being a human and the myriad factors that can illicit new responses and symptoms is, quite simply, irresponsible. While I believe better access to treatments and medicines ought to be pursued, doing so at the expense of someone who is processing a death while balancing the responsibilities of their own life isn’t the right path. At least for now. And maybe never.
“How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer,” Barry, Ellen. The New York Times. 2022
“A.P.A. Offers Tips for Understanding Prolonged Grief Disorder, American Psychiatry Association, 2021.
Ibid.
Institute of Medicine (US) Committee for the Study of Health Consequences of the Stress of Bereavement; Osterweis M, Solomon F, Green M, editors. Washington (DC): National Academies Press (US); 1984.
Great piece!