The mourning after: Our understanding of grief is changing
Prolonged grief disorder is now classified as a psychiatric condition. What really happens to the body, via the mind, as we mourn? Updates from our inner world.
Sometimes, grief won’t fade. Years after a death, the bereaved person still cannot bear the mention of a name. Cannot care for themselves or their family. Or resume work or a social life. We know people like this. Some of us are, or have been, people like this.
There is a term for such affliction now, where there wasn’t one before.
Prolonged Grief Disorder has been recognised by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, in 2022 (and by the World Health Organization in the International Classification of Diseases 11th Revision, in 2018).
The inclusion came, in large part, because of research and lobbying by a clutch of researchers in the US, UK, Netherlands and Australia.
“We felt we needed to change the perception that all grief is normal,” says Holly G Prigerson, professor of sociology in medicine at Weill Cornell Medicine in New York City and one of these researchers.
Prolonged grief disorder (PGD) is defined as a yearning or longing for the deceased that is so persistent that it results in a preoccupation with the death and significantly impairs functioning. When such a state of chronic mourning persists for a year or more, it can place the person at greater health risks, and at greater risk of self-harm, says Prigerson, who has been studying its effects for three decades.
How common is it? “For a substantial minority, about 1 in 10, the adaptation to loss doesn’t progress naturally,” says Natalia Skritskaya, an adjunct associate research scientist at the Center for Prolonged Grief at Columbia University. “The early intense grief persists, dominates the mind, and stops the person in their tracks.”
What does such grief do to the body? Well, the brain perceives grief the way it does all other forms of emotional trauma: as a threat to survival.
Typically, triggers cause trauma to resurface, activating the fight-or-flight response. With grief caused by bereavement, triggers appear everywhere: Living in the same house, going to the same restaurants, using the same commute to work as one did when one still had this person in one’s life. And they appear over and over.
Each time, the fear centre of the brain lights up, pumping stress hormones such as cortisol through the body; raising the heart and respiratory rate, as blood is redirected from vital organs to muscles, which are on high alert. Outwardly, this may manifest as shortness of breath or anxiety. Inwardly, the body is readying for battle.
“All these processes take up a lot of bandwidth in the brain, so it’s not surprising that after a traumatic loss people also experience symptoms of brain fog, typified by impaired concentration and attention,” says Dr Lisa Shulman, professor of neurology at the University of Maryland and author of Before and After Loss: A Neurologist’s Perspective on Loss, Grief, and Our Brain (2018).
In 2012, Dr Shulman lost her husband, neurologist William Weiner, 17 months after he was diagnosed with cancer. Her own trauma over this loss caused her to investigate the physiology of grief, and her book explores her findings. “Emotionally triggering experiences following loss repeatedly activate the fear centre of the brain, strengthening certain neural pathways over time,” she says. This results in increased anxiety and hyper-vigilance.
In most people, as healing occurs — aided by therapy, community, routine and time, among other factors — the triggers lose their efficacy, the panic response eases, and normalcy gradually returns.
According to the Diagnostic and Statistical Manual, PGD can be diagnosed if the individual shows any three of eight symptoms a year or more after the loss of a loved one: disbelief of the death, avoidance of reminders, intense emotional pain, difficulty in reintegration, emotional numbness, identity disruption, intense loneliness, a feeling that life is meaningless; and experiences these significantly more often than before.
The recognition of the disorder brings with it a new kind of hope, researchers say. “It’s a big relief for many who now know that there’s a label for how they feel and that other people are struggling with it, and there is a hope for effective treatment,” says Natalia Skritskaya of the Columbia Center. “With the official, standardised criteria, we can now conduct randomised controlled trials to determine the most effective treatment,” Prigerson adds.
Treatments grounded in the cognitive-behavioural approach have been shown by research to be the most beneficial. Since 2013, the Columbia Center has been training clinicians in PGD therapy, developed by the university’s professor of psychiatry, Kathy Shear. Richard Bryant, professor of psychology at the University of New South Wales in Australia, and psychology professor Rita Rosner at the Catholic University of Eichstaett-Ingolstadt, Germany, have created such programmes too.
The primary aim of this targeted psychotherapy is to identify impediments (such as disbelief, or avoidance of reminders that the person is dead) and facilitate the natural, adaptive process of grief.
Here at home, researchers at the All India Institute of Medical Sciences (AIIMS), New Delhi, have been studying prolonged grief since 2016. A paper published in the journal Transcultural Psychiatry last month offers interesting insight.
“Prolonged grief… may be influenced by social expectations even when individuals may have overcome their grief,” the study states. For instance, the paper outlines, a bereaved widow may be expected to lead a life devoid of pleasurable activities.
Even when grief is severe or persistent, showing symptoms such as weight loss, excessive displays of emotion, dissociation or suicidal ideation, the help offered is often limited to counselling from family or friends, or religious ceremonies, the paper goes on to state. “Even if help is sought from a mental health professional, it is usually for ‘counselling’ to ‘overcome grief’ or to address specific symptoms.”
A pandemic-era study conducted a continent away, in the UK, underscores a key observation in the AIIMS paper: that culture and environment can greatly impact how one progresses from loss to healing, or alternatively to prolonged grief disorder.
In a longitudinal study of bereavement conducted during the pandemic, researchers at the University of Bristol and Cardiff University investigated the rates of PGD among 711 people who suffered a loss between March 2020 and January 2021 in the UK.
The study checked in on each person twice: 13 months after their loss, and 25 months after it. They found that 35% of subjects met the criteria for PGD at the first marker, of 13 months; and 29% still did at the 25-month marker, up from an average of 10% maintained across pre-pandemic studies.
“The COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time,” study co-author Dr Emily Harrop, a research fellow at the Cardiff University School of Medicine, said in a statement, after the findings were published in Frontiers in Public Health in September.
Unexpected deaths, social isolation, loneliness in the early bereavement phase, and a lack of social support over time, were likely factors behind this far higher incidence of PGD, the report noted.
That’s quite a few twists and turns since the last big shift in our understanding of grief. That last big shift came in 1969, when the Swiss-American psychiatrist Elisabeth Kübler-Ross famously defined the five stages as denial, anger, bargaining, depression and acceptance.
“There are undeniable truths to those stages,” Prigerson says. “The first reaction is often shock and disbelief; and an acceptance or resignation and eventual reintegration do come over time.” The psychological community has, of course, long since moved on from the idea that these stages are linear. There is universal agreement that grief is, instead, disorderly, recursive, unpredictable.
Prigerson, in the 1990s, set out to untangle this a bit, by determining if grief symptoms were distinct from those of bereavement-related depression. What she was investigating was then being called complicated grief. Marked by symptoms such as disbelief and loss of meaning, identity or purpose, it has now been folded into the definition of PGD.
Meanwhile, other terms are being used to describe subsets of grief. Anticipatory grief may occur before the death of a loved one, often among caregivers of the terminally ill. “It can be a reaction to secondary losses and the changes that the illness brings,” says Skritskaya.
Disenfranchised grief can be experienced when losses are not readily recognised or respected by society. These can include a miscarriage, diagnosis of infertility, or the death of someone ostracised by society (due to issues such as addiction or violent crime).
Whatever the nature of the bereavement, science is confirming that community is vital.
This is partly because the death of a loved one often brings with it social dislocation and deprivation. There is, in many cases, a loss of a sense of self as reflected by the loved one; a loss of their nurturing and support; a loss of a world in which one was familiar, loved and needed too, Prigerson says. “Offering nurturance is an under-appreciated need after the loss. All these social voids, if filled even partially, will go a long way to promoting an adaptive adjustment to a significant loss.”
She is contacted nearly every day, she adds, by someone seeking relief from the distress and dysfunction caused by grief. “I think there needs to be greater recognition of how interconnected we all are.”