When Grief Doesn't Go Away
Known as prolonged grief disorder, a new diagnosis recognizes that long-lasting grief can lead to depression, but treatment is available
It made front page news in March 2022, and for those of us who have lost loved ones in the past few years (whether due to COVID, other illnesses or tragedies) it's a relevant, albeit painful, subject.
It's the subject of grief. The newly revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR), also known as Psychiatry's Bible, has added a new diagnosis — prolonged grief disorder (PGD) — which has been the topic of heated discussion among psychiatrists, therapists, researchers and others who deal with those left behind when a death occurs.
Is it helpful to call chronic grieving a disorder, or is labeling the process of working through a loss, even if it takes longer than people think it "should" take, something that can be hurtful or even harmful?
In her new book, "The Grieving Brain," psychologist and neuroscientist Mary-Frances O'Connor writes, "A mental disorder shares a fuzzy boundary with normative human difficulties. Researchers and psychologists are working hard to understand and explain the murky boundary between disordered grieving and the universal human pain of loss."
It can be comforting to know that other people have struggled in the same way and that you are not the only one suffering so terribly.
Prolonged grief disorder impacts approximately 7 - 10% of all bereaved persons. It can be comforting to know that other people have struggled in the same way and that you are not the only one suffering so terribly. It is validating for family and friends to know that it is a disorder and that you just can't "snap out of it."
Some experts, insisting that everyone has their own time frame for healing, worry that pathologizing prolonged grief by calling it a disorder could potentially make some people feel worse about themselves. However, news of the diagnosis has spread the word that there are treatments aimed at lessening symptoms, and that reaching out for help can speed the process of recovery, which is a positive thing.
Understanding the Grief Process
"We now know that time alone does not heal all wounds," says Mariann Arcari Rubin, a psychotherapist and certified grief recovery specialist in Nassau County, New York. "It is important to notice when you are triggered (for instance, when you unexpectedly discover a photo in the corner of a drawer) to feel the feelings of loss, to articulate them, and to process the whole array of complex emotions with a trusted listener so you can move forward and past these debilitating feelings."
In the "normal" grieving process, the first stage is acute grief, marked by strong feelings of longing and sorrow, insistent thoughts and memories of the person who died. Other painful emotions such as anger, guilt, remorse or anxiety may be present.
The "adapting to loss" stage is marked by acceptance of the reality and permanence of the death and working toward rebuilding one's capacity to experience a sense of well-being.
Loss of a loved one through death is a risk factor for development of depression, which is why getting early treatment for prolonged grief disorder is so important.
There can be a mixture of negative and positive feelings, as the loved one is remembered with warmth, love or pride, possibly mixed with relief that the deceased is no longer suffering. The goal of this stage is to begin to envision a future that can be filled with purpose, meaning and satisfaction.
"Integrated grief" is a lasting, bittersweet form of grief which has a place in the person's life but does not dominate it or have great influence over feelings, thoughts or behaviors. Integrated grief generally stays in the background, but the intensity of the pain may be reactivated on an anniversary, birthday or holiday for years to come.
When the process stalls, people can suffer from Prolonged Grief Disorder. While there are some similarities to depression, in prolonged grief the thoughts and feelings circle more around the deceased, while in depression the emotions are more free-floating.
Depression is marked by a lack of enjoyment in any activity and a sense of hopelessness, often with feelings of worthlessness or self-hatred.
Loss of a loved one through death is a risk factor for development of depression, which is why getting early treatment for prolonged grief disorder is so important.
As listed in the DSM-5-TR, PGD has very specific criteria, which includes the core symptoms of persistent intense yearning and longing and preoccupation with thoughts and memories of the person who died. The death must have been at least 12 months ago (six months for children and adolescents.) At least three of the below symptoms must also be present on most days:
· A marked sense of disbelief
· Avoidance of reminders of the loss
· Intense emotional pain related to the loss
· Difficulty engaging and reintegrating in ongoing life
· Emotional numbness
· Life feels meaningless, and the future seems bleak and empty
· Feelings of identity confusion or disruption
· Intense loneliness as a result of the death
These symptoms must cause significant distress or impairment in social, occupational, or other important areas of functioning.
Risk factors for the development of prolonged grief include a history of mood or anxiety disorders; when the death is sudden, unexpected or violent; when a young person dies; when there is more than one loss within a short period of time and when the normal mechanisms for grieving are unable to take place.
Pandemic deaths, when families were unable to be with dying loved ones and when memorial services were only able to be viewed on computer screens, contain many of the ingredients that could lead to a painful and difficult-to-resolve extended period of grief.
Treating Prolonged Grief Disorder
Over the years, there have been a number of treatments designed specifically for people who are struggling with grief.
One of the most effective, Prolonged Grief Disorder Therapy (PGDT), formerly called Complicated Grief Therapy, is a short-term therapy which fosters adaptation to the loss by addressing stuck points and promoting what are referred to as healing milestones. These include accepting grief and letting it find a place in your life, learning to live with reminders of the loss, and finding ways to ease emotional pain.
"One of the most powerful activities we encourage is to write a letter to the deceased with apologies, forgiveness or 'significant emotional statements.'"
Developed by psychiatrist Dr. Katherine Shear, founding director of the Center for Complicated Grief at Columbia University School of Social Work in New York, its effectiveness has been shown in multiple studies including randomized clinical trials funded by the National Institutes of Mental Health, and it is now being used by clinicians across the country.
The Grief Recovery Method is an evidence-based program aimed at helping people identify how their loss is affecting them and what factors may be hindering their healing.
"Individuals go through a structured process which includes sessions with a specialist, readings about grief, loss and coping, and suggestions for stress-relieving behaviors. One of the most powerful activities we encourage is to write a letter to the deceased with apologies, forgiveness or 'significant emotional statements,'" explains Rubin.
Another form of treatment proven to be effective is exposure therapy, paired with cognitive behavioral therapy, where the bereaved are encouraged to repeatedly revisit intense and overwhelming memories and emotions about the death while the therapist provides support.
Antidepressant medications, surprisingly, do not appear to be useful in reducing symptoms of prolonged grief disorder, more proof that it differs from clinical depression.
Because there are some similarities between the strong feelings of craving, yearning and attachment seen in bereavement and those during the withdrawal process in addiction, there are several clinical trials using oral Naltrexone (which is currently used for alcohol and opioid dependence) as pharmacological treatment for prolonged grief disorder.
"We bereaved are not alone," wrote Helen Keller. "We belong to the largest company in all the world — the company of those who have known suffering."
Grief aches and throbs and breaks our hearts, but it does not have to ruin our lives forever. There is help, there is hope and there is healing.
