The Pill That Promises to Cure Grief

I came to know grief from the bad breath—the dry mouth, the fatigue, the nausea. I was twenty-one when my father died of brain cancer. At first, the corporeal sensations were all I could manage. At the time, I wrote in my journal that grief felt like an infinite black ocean with no horizon: some days I drowned, some days I had a small rowboat. Now, grief is something I’ve simply learned to live with, even on days when it feels as fresh as in the beginning. In those early days, I mentally tracked my grief’s progression. I vaguely knew about the so-called “stages of grief” from movies and television, but I wondered what kind of life I would live from now on, how grief would linger and for how long. Would the grief ever go away, or would it be a permanent fixture of who I was? In 2022, prolonged grief disorder was added to a text revision of the fifth Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a guidebook referenced by clinicians around the world. Too much grief had become an official diagnosis. The idea of prolonged grief came about in the 1990s and has sparked controversy among experts since. For some, diagnosing and, subsequently, medicating grief risks turning normal human processes into symptoms. For others, the value of a diagnosis brings legitimacy to the chaos of emotion. The debate sparked another question: If grief can be diagnosed, can it be cured?

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Prolonged grief, according to the DSM-5, is an intense yearning for the deceased that interferes with everyday life and that lasts at least a year for adults and six months for adolescents and children, unless that grieving period is normative in one’s culture. While researchers of the disorder claim that it applies to as little as 3.3 percent of grieving people, those who do exhibit prolonged grief are at risk of severe outcomes, including suicidal thoughts and heart attacks. For some, prolonged grief disorder’s induction into the DSM-5 may make it appear to be clinically official, but the diagnostic manual has been criticized by industry insiders for years, both for having too vague symptoms—which can lead to overdiagnosis—and for suspected corruption. For any disorder to make it to the DSM, it has to be approved by a committee of experts. But Kaori Wada, a grief researcher and associate professor at the University of Calgary, agrees with many in the industry that there’s little transparency behind the curtains of the committee process. A study published in 2023 found that fifty-five out of ninety-two US-based physicians who contributed to the DSM-5 had financial ties to the pharmaceutical industry. Research going as far back as 2006 similarly found that over half of DSM contributors received research funding, consulting fees, or other financial compensation from drug companies. Wada says that, in the past, there have been initiatives to establish more transparency around how the DSM is assembled. Still, the implications of a conflict of interest within the DSM could impact the way we view mental health in society, considering the breadth of the manual’s reach—it’s been called the “bible” of mental health disorders, can influence the approval of new psychiatric drugs, and even set precedent in court cases where mental illness is used as grounds for the defence. Proponents of a grief disorder, led by Holly Prigerson, a professor at Cornell University, have been advocating for its recognition for over a decade under a variety of names, including complex grief, complicated grief, traumatic grief, and delayed grief. Before the disorder was added to the DSM-5, proposed treatments began emerging. One contender has emerged to be the world’s first grief pill: naltrexone. The drug came into the market in 1984, to treat alcohol and opioid addictions by cutting off the pleasure one feels from the substance. Recent research, spearheaded by Prigerson, theorizes that a grieving person thinking of the deceased triggers the “reward center” of the brain—like a drug—and naltrexone could help diminish that obsessive focus. (It’s often taken for between twelve weeks and a year.) The premise is that those with prolonged grief disorder can become addicted to the person they lost. Other grief experts vehemently disagree with the addiction framing. Kara Thieleman, a grief researcher at Arizona State University, isn’t convinced by the drug. “There’s absolutely no reason to think that naltrexone will only affect the person’s relationship to the person who died,” she says. One of the side effects of naltrexone is losing the capacity to socially bond with others by blocking our endogenous opioids, which are neurotransmitters in our brain that impact emotion. “It can disrupt social networks,” she says, by making users less able to feel intimacy. “And I think that’s a bad idea when someone is grieving and they really need the support of their communities.” A trial on the effectiveness of naltrexone as a treatment for prolonged grief disorder is scheduled to be completed in July. When it comes to actually diagnosing the disorder, it’s hard for doctors to draw the line between normal grief and prolonged grief, at least beyond measures of time, especially given the cyclical nature of grief. “[Prolonged grief disorder] overlooks differences in the type of loss. Whether it was violent or non-violent, expected, not expected. Was it a grandparent? Or was it your child?” Thieleman says. “There are real differences, that we know from the research, [in] how intensely people grieve, how long they grieve, [and] what that grief experience looks like.” The intense grief a parent might feel after losing their child in a traumatic way, for instance, might tick the boxes of prolonged grief disorder. But, Thieleman argues, their grief is natural and shouldn’t be considered a disorder. At the same time, Prigerson’s research in favour of prolonged grief disorder argues that the same parent would benefit from a diagnosis to legitimize and treat their inability to handle grief. The paradox of grief is that both stances are, in their own way, right. Some people don’t want to lose their grief; others would do anything to ease it quickly—even by taking a pill. Then, there are those who may alternate between both stances, depending on the day. In a diagnose-and-medicate culture, even those who are in favour of recognizing prolonged grief disorder are skeptical that doctors will take the time or have the ability to fully evaluate the disorder effectively, potentially leading to overdiagnosis and overmedication. Marney Thompson, the director of the bereavement services program at Victoria Hospice in British Columbia and an executive at the Canadian Grief Alliance, believes in the value of putting a name to debilitating grief. “It helps people to make sense about why they’re stuck in their grief,” she says. But Thompson worries that health care providers with “the power of a prescription pad” will diagnose too swiftly, without “taking the time to fully understand what that person’s experience is, what their needs are, what a true assessment of disorder grief involves [while offering] access to a range of supports, not just a drug.” Treatment doesn’t necessarily need to come in the form of a pill, says Thompson, who is trained in prolonged grief therapy, a cognitive behavioural approach that builds off of exposure therapy often used for post-traumatic stress disorder. This therapy was developed by Katherine Shear—another one of the earliest proponents of prolonged grief disorder—and, according to Thompson, helps the griever “think the unthinkable, and feel the unfeelable.” The goal, she says, is not to cure grief but to learn to live with it. “I was with a bereaved mom who said, ‘I’m terrified to let any of the grief in because it feels like a black hole that I will just fall in and never come out of,’” says Thompson. Prolonged grief therapy allows you to “go into those spaces in a very structured and protected way.” The aim is to dip into that black hole, feel the grief, and still be able to pull out of it. The problem with grief is there’s no one kind, no single expression. Experts have long dismissed the idea of the five stages of grief—which they say isn’t supported by enough evidence. It’s too neat, too ordered. What does it mean to try and treat something so resistant to categorization? In my experience, there is no one-size-fits-all approach to grief. I found counselling unhelpful; my mother found temporary comfort in a support group. Grief’s unpredictability makes it tricky, and our general misunderstanding of it complicates society’s ability to handle it in others. After my dad’s passing, my friends at the time grew awkward around me. They didn’t know how to speak to me, and some disappeared from my life entirely. Every person has a different way of understanding death and grief. “In a world where grief literacy is so low, I worry about our intolerance for being present with people in pain,” says Thompson. “I think we’re so quick to jump to the solution, the fix, the ‘get over it’ that we just don’t allow space for real human emotion, which is sadness and sorrow and suffering.” According to Wada’s research, our tendency to diagnose and pathologize is embedded in a “happiness culture” that has high standards; when grief impairs our ability to be productive in society, it is perceived as an illness. For both Wada and Thieleman, when we progressively funnel human experiences into the language of disorders and treatment, we lose our capacity for complexity, for seeing the bigger picture. And while including prolonged grief disorder in the DSM-5 may lead to help for some people, for others, it’s too narrow a lens, says Thieleman. “It shifts our focus to what’s wrong with the individual instead of what this person experienced,” she says. “What has led them to where they are now in their own life? How has their culture impacted them? Their social support?” This lack of considering context and individual circumstance is a problem, says Wada, that applies to how we view mental health disorders in general. The definitions and diagnoses of mental disorders are always contested and controversial because they’re made with criteria that reflect the time and values of the Global North, says Wada. Hysteria, for example, used to be a mental disorder in the DSM. So was homosexuality. Grief, similarly, is shaped by context. Islamic rule discouraged me from being part of my father’s funeral procession, as my grieving might have interfered with allowing his soul to depart. Death is so intangible that rationalizing it will always be contradictory. Despite the conflicting perceptions of grief—be it diagnostic or cultural—grief is individual. It swallows and recedes, like a wave on sand. The post The Pill That Promises to Cure Grief first appeared on The Walrus.