Does She Have a Grief Disorder?

A 68-year-old woman seeks care from her primary physician because of trouble sleeping 4 years after the death of her husband. On questioning, she reveals that she is sleeping on a couch in her living room because she cannot bear to sleep in the bed she shared with him. Does she have prolonged grief disorder?

She has stopped eating regular meals because preparing them makes her miss him too much; she still has meals that she cooked for him in her freezer. The patient often ruminates about how unfair it was for her husband to die, and she is alternately angry with the medical staff who cared for him and angry at herself for not recognizing his illness earlier. She finds it too painful to do things that she and her husband used to do together, and she thinks about him constantly and often wishes she could die to be with him.*

This does not describe “normal” grief. Actually, it is a case vignette taken from an article by M. Katherine Shear, founder and director of Columbia University’s recently renamed Center for Prolonged Grief (formerly the Center for Complicated Grief). Dr. Shear’s heartbreaking scenario offers a shocking introduction to a human condition the World Health Organization now calls
prolonged grief disorder, a condition also commonly known as complicated grief.

What is Prolonged Grief Disorder?

I know something about prolonged grief disorder because I suffered from it for nearly two decades. This followed the death of my husband, Thomas Dayton, of cancer in 1998 at the age of fifty-two. But until 2017, when I began writing a memoir about my experience, I had no name for what I had been through. I had little insight into why my grief had gone so dreadfully awry.

It’s no exaggeration to say that I spent the first decade after Tom died drowning in grief. Looking back, I must have kept my
head above water often enough so that I could show up for work (where I accomplished little or nothing for years on end), shop for frozen entrees (which, for several years, I vomited out after eating), and visit the cemetery every dry fall, spring, and summer day so that I could sit on Tom’s grave and talk with him while cautiously consuming a soft-shell taco from Taco Bell.

Even during a pandemic that has killed more than five million people worldwide, there is still such a thing as normal grief. It’s the kind experienced by more than 90 percent of people who lose a close loved one. For most of us, that involves traveling a relatively straightforward psychological progression. It begins with the actual loss (bereavement) and moves into our responses to that loss (grief). It continues with learning to live with our loss (mourning) and concludes with the return to a satisfying life (recovery).

What is Normal Grief?

We expect this journey to take place within the norms and traditions of our civil society, our culture, and our religions, which means that for most people in the United States, a normal course of grief usually lasts about a year. (It may last about six months in many other countries.)

In the early stages of normal grief, when we feel our loss most acutely, most of us are still able to function day to day, however difficult that may be. But when complicated grief interferes, our journey not only lasts longer, it is accompanied by “impairment in daily functioning.”

According  to Katherine Shear, during the course of normal grief, “acute grief, intensely painful and dominant, becomes integrated, muted, and in the background. CG [complicated grief] is the syndrome that occurs when this transformation does not occur.”**

Complicated Grief Requires Action

For two years after Tom died, I wrote daily letters to him in which I spoke about anything on my mind or in my hearty. I called this practice “Talking to Tom.” In addition to serving as an unmediated record of my grief during that time, my letters also tell the story of Carol. She was a close colleague whose husband died of cancer three months before Tom.

On May 19, 1999, ten months after Tom’s death, I wrote:

I look at Carol and realize how much better she’s doing. I don’t know how she keeps the
pace she does, but I’m sure she’s always done that to some extent. And I’ve always kept
to myself with you. It’s very different—two very different people in many ways with
very similar circumstances and very similar feelings except I think mine are more
extreme. I think however painful it is, Carol is somehow determined to make her way and
I see no way to make mine.

While I could recognize that I wasn’t getting better after ten months, I lacked the acuity to wonder why. That, I learned years later, was also part of my experience of complicated grief.

Prolonged Grief Disorder is Complicated Grief

The two defining differences between normal grief and complicated grief are the prolonged persistence of acute grief and the presence of “complicating processes.” Though I experienced any number of complicating processes, I could not see them for what they were.

In hallmarking complicated grief, researchers cite up to a dozen typical symptoms, including unabated, intense yearning for the person who has died, a recurring sense that life is unbearable without the lost loved one, a continuing wish to die in order to be reunited with the lost loved one, a sustained refusal to accept the fact that the loved one has died, an inability to bring to
mind memories of the loved one because they are too painful, and “significant distress or impairment in social, occupational, or other important areas of functioning,” including feeling separated from one’s world.

In my case, that sense of profound disconnection, along with a vague, anxious feeling of otherworldliness, persisted for almost nine years. Experts call this state emotional numbness.

Deep Connection May Complicate Grief

Grief is more likely to become complicated if one loses one’s spouse in the prime of life. Other situations, if a close loved one was murdered, committed suicide, or died suddenly or accidentally, can cause complicated grief. Prolonged grief disorder is also more likely if the grieving survivor was especially close to the lost loved one.

My situation, I ultimately learned, was not atypical. Not only were Tom and I deeply connected to each other, we did not
have children with whom to share our love. We lived unashamedly for each other until his death in the prime of his life.

How We Recover from Prolonged Grief Disorder

Twenty-three years after the death of my husband, I am better. I’m reconciled to my loss and able to reflect on my experience, which is why I have suspected since the beginning of the coronavirus pandemic that people who have lost a close loved one to covid 19 are at increased risk for prolonged grief disorder.

Why? There is the suddenness. A loved one, whether younger or older, can be well one day, sick the next, on life support the next, and dead the next. Even when death is not sudden, there is the isolation. Many covid victims enter the hospital, linger for
several weeks on a ventilator, and die without ever being seenby their close loved ones. It’s as though these victims have disappeared rather than died. Their survivors could not kiss their loved ones good-bye, nor could they gather to properly bury or memorialize their lost loved one. Without these customary practices, how can survivors be sure that their departed one is really dead?

Reducing Complicated Grief

These circumstances alone offer fertile ground for grief to go awry, but that’s not the worst of it. Because so many people have died of covid, the sheer number of Americans now grieving has grown substantially. In a September 2021 press release from the American Psychiatric Association, APA president Vivian B. Pender says that “the circumstances in which we are
living, with more than 675,000 [now over 750,000 and growing] deaths due to covid, may make prolonged grief disorder more prevalent.” APA medical director and CEO Saul Levin adds that “especially now, sharing information and increasing awareness about prolonged grief disorder is essential.” ***

We must do what we can to appropriately care for all who grieve. We might start by informing ourselves about the forms that grief can take by visiting websites like that of Columbia’s Center for Prolonged Grief. Or we might continue by simply being present for and available to a grieving loved one, rather than rushing to “help” them.

I hope that those of us who are suffering might do what I failed to do: seek whatever kind of help you feel able to accept. Equally important, we must share our grief stories without shame or short shrift because they are among the most
powerful healers we have.

Footnotes on Complicated Grief

* Shear, M. Katherine. “Complicated Grief.” The New England Journal of Medicine, January 8, 2015: 153-160.
** Shear, M. Katherine, et al. “Grief and Mourning Gone Awry: Pathway and Course of Complicated Grief.” Dialogues in Clinical Neuroscience 14, no. 2 (2012): 119–28.
*** “APA Offers Tips for Understanding Prolonged Grief Disorder.” American Psychiatric Association, September 23, 2021, www.psychiatry.org.

Andrea Gilats is the author of After Effects: A Memoir of Complicated Grief (University of
Minnesota Press, February 2022).