There is a grief condition that can feel like an emotional chokehold. It’s a kind of grief that might remind you of one of the creatures from the movie, Alien. It is grief that can feel like it has captured a person’s mind or life in a tight vice grip that won’t let go.

In the latest New York Times article on Prolonged Grief, Dr. Amy Cuzzola-Kern, shares about a type of therapy called Prolonged Grief Disorder therapy. In that article, she recounts sessions with a therapist and how she would recall the day that she learned her brother had died — a painful process, but one that gradually drained the horror out of the memory. By the end of those 16 sessions, she said, she had accepted the fact of his death. For her, the diagnosis of Prolonged Grief mattered only because it was a gateway to the proper treatment.

The condition called Prolonged Grief is described in this article and yes, it is a real thing. And if you, or someone you know, are suffering from Prolonged Grief, chances are, they’ll be relieved to know that there is a name for what they have been experiencing.

Prolonged Grief Disorder is a form of grief that is unrelenting, intense, and pervasive, overwhelming a person’s life and making it difficult to function. According to a study published in the Journal of Death and Dying, African Americans are more likely to experience Prolonged Grief; however, they are less likely to pursue treatment due to cultural stigma and systemic barriers to care.

“I’ve lost more people during the pandemic than in half of my lifetime.” - Columbia World Project (CWP) focus group participant

The CWP aims to reduce COVID-19 related prolonged grief disorder in Harlem’s Black community by partnering Columbia University researchers with local faith leaders and other community leaders to address intense and pervasive grief that has emerged as a result of the pandemic. The project partners include leaders from the Harlem community and Columbia University scholars, who are adapting digital tools – such as apps and videos – developed by Columbia’s Center for Prolonged Grief to address Prolonged Grief Disorder.

For some suffering with Prolonged Grief Disorder, having the ability to identify what it is they are dealing with is the first step in effective care. According to available research, without treatment, Prolonged Grief Disorder can persist indefinitely, leading to further problems such as substance abuse, suicidal thinking, sleep disturbances and impaired immune function.

“As a Pastor I have had many members silently struggling with grief…” - CWP focus group participant

During these focus groups the unlocking of healing, peer recommendations and reflections began with having initial in-depth and vulnerable conversations around consequences of Prolonged Grief Disorder while in tandem, introducing participants to grief literacy resources and tools pertaining to the new diagnosis and how these can support facilitators as well as community members in need of services and respite.

“I have heard the same message for years, particularly from Black leaders in the faith-based community: Our people are in dire need of help. Traditional places where our community typically seeks emotional support are, for the most part, not equipped to handle the demand for help, and this is problematic.”- Nicole Alston, MSW

It is not lost on us that there is a debate about the PGD diagnosis, and what this means in terms of supporting people. What we know is that African Americans are more likely to suffer from Prolonged Grief Disorder, and least likely to have access to adequate healthcare.

“The hungry don’t care about how a meal is prepared. The debate is not the most important issue; getting people access to information and support is essential.” - David Robertson, MA, MSW

About the Authors

David Robertson, MA, MSW, is a social work technologist with CPG and supports community outreach initiatives, curriculum development, and special projects. David is an alum of Columbia School of Social Work and a former SAFE Lab fellow in which he served as a researcher on the CWP. David has a background in qualitative and quantitative research on courage and has worked as a community mobilization specialist. He combines his knowledge of advocacy, social justice, grief, and trauma-informed practices with contemporary methods like restorative practices and wellness writing to support organizations in creating shared experiences that foster belonging and connection. Outside of his work at CPG, David is an associate therapist for a private practice.

Nicole Alston, MSW, has worked with the Center for Prolonged Grief in various capacities over many years. She is the CPG Community Liason, CWP Educational Advisor and Focus Group Facilitator, and serves as a clinical field instructor to Columbia School of Social Work students learning about grief, adaptation to loss, and how to effectively help people struggling with prolonged grief. Outside of her work with CPG and CWP, Nicole has drawn on her diverse skillset to provide grief support and provide support as an associate producer on Oprah Winfrey’s documentary The Color of Care which focuses on communities affected by disparities in health.