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Prolonged Grief Disorder: What This New Diagnosis Means for You and Your Mental Health

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I’ve written often on my decade-long struggle with grief after losing my father in my 20s. In some ways, that journey isn’t yet over. I still avoid all discussion of death, cancer, or thinking even of the good memories. It’s become a key feature of my depression, but at what point does grief become prolonged grief disorder?

The newest revision of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5-TR, seeks to answer that. That’s why I’m here — to give you everything you need to know on a new and somewhat contentious disorder which I may or may not have been diagnosed with had it come earlier.

What Is the DSM-5-TR?

Let’s start at the beginning. In 2013, the American Psychiatric Association (APA) released the DSM-5, the fifth edition of the main guide used by medical professionals to diagnose mental disorders or mental health conditions. Almost a decade later, they are now releasing the DSM-5-TR — or Text Revision — which serves as a smaller update based on new evidence and cultural shifts around mental illness, such as the impact of racism and discrimination on mental health. This update, due at the end of March 2022, contains a number of relevant changes, but the most important might be the inclusion of a new diagnosis — prolonged grief disorder.

What Is Prolonged Grief Disorder?

The APA describes prolonged grief disorder as the “persistent inability to overcome… grief for the loss of a loved one for at least one year or more, with intense yearning or preoccupation with thoughts or memories of the deceased person almost every day since the death. These symptoms are severe enough to impair day-to-day functioning.”

Risk factors for developing prolonged grief disorder can include sudden and traumatic deaths such as suicide or accident, but also can include multiple losses, a previous diagnosis of mental health conditions such as trauma, or poor social support. The APA says that “following the nonviolent loss of a loved one, 1 in 10 bereaved adults is at risk for developing prolonged grief disorder.”

Perhaps more than any other time in recent history, we live in a time of grief and bereavement. As we pass the second anniversary of the ongoing COVID-19 pandemic, we mark 6.1 million deaths from the disease worldwide, with 973,000 of those deaths in the United States alone. A recent Washington Post article included a quote from Holly G. Prigerson, professor of sociology in medicine at Weill Cornell Medicine in New York City, in which she said: “In the current environment, we are likely to see more people whose grief doesn’t lessen with time, and whose intense suffering disrupts their ability to function.” Our typical grief rituals have also been disrupted by this pandemic, as we have been unable gather in times of loss, many of us forced to skip traditional funerals due to isolation mandates and the risk of infection.

Prolonged grief disorder (PGD), however, wasn’t born solely from the COVID-19 pandemic. A 2015 article in the Journal of Psychopathology discussed the idea of prolonged grief as a separate diagnosable disorder but noted that the DSM-5 failed to include it, listing it as a condition requiring further study under the name “persistent complex bereavement disorder.”

Now, the APA has decided there is enough evidence to classify prolonged grief disorder as a separate experience to “normal” grief.

What Are the Symptoms of Prolonged Grief Disorder?

The DSM-5-TR lists the following symptoms for prolonged grief disorder:

  • Feeling as though part of you has died
  • A sense of disbelief about the death
  • Avoidance of reminders that the person is dead
  • Strong emotional pain related to the death (anger, bitterness, or sorrow)
  • Difficulty moving on with your life (socializing with friends, pursuing interests, planning for the future)
  • Emotional numbness
  • Feeling that life is meaningless
  • Extreme loneliness (feeling alone or separate from others)

Someone with prolonged grief disorder might also:

  • Leave the deceased person’s belongings exactly how they were before their death
  • Have trouble remembering positive memories about their loved one
  • Have a hard time trusting other people
  • Use more tobacco, alcohol, or other substances
  • Have suicidal thoughts or behavior

Is Prolonged Grief Disorder Different in Children?

Children and teenagers may react differently to grief, particularly with the loss of a family member such as a parent, loved one, or caregiver. This is to be expected, but the DSM-5-TR lists the following differences for prolonged grief disorder in children. They might:

  • Wait for the deceased person to come back
  • Go back to places where they last saw their loved one
  • Become fearful others may die
  • Have “magical” thinking or separation anxiety
  • Show intense sadness or emotional pain through different moods

What Is Required for a Diagnosis of Prolonged Grief Disorder?

The APA notes that prolonged grief disorder may only be diagnosed one year after the death of a loved one. Additionally, while Psychiatry Online has a full list of the risk factors, diagnostic criteria, and their individual requirements, most require patients to present a number of symptoms (typically three) to a “clinically significant degree” and symptoms need to have occurred nearly every day for at least the last month. The symptoms must also not be explainable by another mental disorder such as major depressive disorder (MDD), post-traumatic stress disorder (PTSD), or substance use disorders.

Isn’t Prolonged Grief Disorder Just a ‘Normal’ Expression of Grief?

It’s a fair question. Grief is a typical human experience, and every expression of grief is valid. While one bereaved person may feel more at ease with their grief in a few months, it may take another bereaved person a number of years to fully grow accustomed to a world without their loved one. Former Mighty reporter Elizabeth Cassidy shared an excellent grief analogy from Twitter member Lauren Herschel that beautifully demonstrates why you can’t just “get over” grief.

Professionals agree that there is a danger in pathologizing a “normal” human experience as a mental health condition. A tweet from Allen Frances, professor and former chairman of the Department of Psychiatry and Behavioral Sciences at the Duke University School of Medicine, called prolonged grief disorder’s inclusion an “awful mistake,” stating that there is “no expiration date on grief” and that it is further proof that the APA can’t be “trusted supervising [the] DSM.” It’s worth noting that Frances was a member of the DSM-IV task force and has been historically critical of the DSM-5 pathologizing everyday life.

The APA seems aware of this critique, as an FAQ page on Psychiatry Online responds directly to it. They state that:

“The diagnosis of prolonged grief disorder is not intended to pathologize grief. Individuals who meet the criteria for prolonged grief disorder experience something dramatically different from the grief normally experienced by anyone who loses a loved one. The grief is intractable and disabling in a way that typical grieving is not. People whose symptoms meet the criteria for prolonged grief disorder need and deserve to get appropriate care.”

Why Does the New Prolonged Grief Disorder Diagnosis Matter?

Despite differing views on pathologizing long-term grief, it matters that everyone has access to appropriate care. In the aforementioned Washington Post article, Katherine Shear, professor of psychiatry at the School of Social Work and founding director of the Center for Complicated Grief at Columbia University, shares an integrative treatment plan that was shown to help bereaved people living with prolonged grief where antidepressants and standard therapy have not. It’s also worth noting, as shared in the aforementioned FAQs by Psychiatry Online, that prolonged grief disorder could be billable under some health insurance coverages.

How Does the Mighty Community Experience Grief?

Anticipating this article, we asked the Mighty community how long they experienced a strong response after grief.

How long did you experience a strong grief response after a death?

Mighty member Dylan P. shared that even over a decade after the death of their grandmother, they still have weeks where they feel as though a part of them has died. Meanwhile, Mighty member @babamungulilyme shared the belief that grief is cultural and widely differs per person. For them, “whitewashing the dead” when their father died was harmful and nobody wanted to acknowledge their individual needs for grieving. Finally, Mighty member @robertrkl shared that they still refuse to talk about or address the death of their loved one in 2017.

As the name of The Mighty’s grief group says, grief isn’t linear. Prolonged grief disorder’s inclusion in the DSM-5-TR might be a blessing for those experiencing lengthy grief if they can find appropriate treatment, but we must also refrain from pathologizing an experience we all must, unfortunately, go through.

For me, I’m unsure if I meet the diagnostic criteria. My experience with mental health and grief these days is complicated, and while I am still deeply afraid of any talk of grief or losing the ones I love, the sting from my father’s death isn’t quite as fresh. In my opinion, diagnosing prolonged grief disorder is only as helpful as the treatment one receives to overcome grief that lingers and affects our quality of life. To grieve is human, but we don’t deserve to be so affected by death that we are unable to truly live.

Stories About Grief on The Mighty

Are you living with grief and mental illness? Our Grief Isn’t Linear group might be right for you. It’s a safe place to talk with other Mighty community members who understand what it’s like to grieve. From my experience, talking to others about the experience of bereavement can be a huge help. You can also read some of the following handpicked articles about grief on The Mighty.

Getty image by svetabelaya

Originally published: March 29, 2022
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