Response to DSM-5 Prolonged Grief Disorder diagnosis
We need a new word for how time proceeds after a profound loss. It is not the same.
It is not the steady linear progression of days and weeks, months and years. We see them on our calendars, marching along in a simple steady rhythm, accompanied by the seasons, the holidays, the cycles of the garden and the graduation gown.
Grieftime is different.
In her brilliant little book, Conscious: A Brief Guide to the Fundamental Mystery of the Mind, Annaka Harris describes two opposing theories of time: Presentism, the idea that time itself is flowing and only the present moment is “real”, and Externalism, in which time is like space, all moments existing simultaneously. We exist in one location of time, which we experience as present, but that is a factor of consciousness, how the mind shapes experience, not the structure of time. This is a mind-bending thought, but one that echoes my clinical experience.
The experience of time is changed in different states of consciousness. Intense meditation, ecstatic prayer, and deep hypnosis shift us into primary process thinking, where past and present exist together, senses combine, and the frontal cortex logic of the structure of time is put aside. We can be back in our childhood home, in the body of a five-year-old unable to see a bureau top, smelling dinner burning on the stove, or tasting the fear of a parent’s anticipated wrath.
So it is with grieftime. Grieftime exists as a conscious powerful moment of loss. It keeps moving, weaving back on itself, fading in and out of awareness, but holding onto one emotional reality that does not follow any rules. “How long has she been gone?” the world asks, and the only answer that makes sense is, “For an instant and forever.” Why is this?
I believe that profound grief is its own state of consciousness. Its emotional reality is different from any of the emotions we use to describe it. Rather, it dislocates us from time and dissociates us from the emotional ground we’ve been standing on until this moment. Sadness is too small a word for the loss; anger too simple a word for the rage; terror too mild a word for the panic and despair. Nothing is the same; nothing will be the same from this moment on. Time as we have known it stops. We enter grieftime.
In grieftime, the calendar is at best a mixed blessing. It offers proof of weeks and months of survival, evidence that you have persevered in the world. But you may not remember those days. You may look back on a blur of events, or a hole in your recollections. I know I finished my sophomore year of college after my father’s sudden death, but I have almost no memories of that semester. Important decisions were made then: changing my course of study, applying to transfer to another university, so the events alone should stand out in memory. But my memories are fractured, truncated, recorded as isolated moments, with no emotion attached. I remember the stairwell where I opened the transfer response letter; my auditorium seat the night I watched the opera role I was no longer performing. Routine events were not recoded at all, as though my psyche knew I was merely walking through life, but somewhere else in time.
In grieftime, dissociation from the things that ground us is common. The sun rises and sets, but we are not sure why. We win or we lose, but it no longer matters. That letter I opened told me they needed more documents to consider my transfer. I don’t think I ever sent them.
Grieftime does not last forever. It is strongest in the early days after a profound loss. It can last weeks, or months, or sometimes years. It is not measured in calendar time, but in the experience of being sucked into a different dimension, where the world swirls around you, but you remain untouched, lost in wherever you need to be to stay alive. In process, in reverie, in disbelief, in despair. In time the edges of grieftime blend, letting the world intrude, letting it matter again. That takes whatever time it takes. Rarely can you make it happen. It’s like noticing that the sun feels warm again, instead of just too bright and painful to your eyes.
Even when synching with the objective calendar returns, we hold on to some unique characteristics of grieftime: amnesia for certain critical moments, flashbacks that catapult you back to intense emotion; occasional dislocations in time when grief is stimulated by events.
Profound loss changes everything. Grieftime is the scar tissue we carry to acknowledge that truth.
All of this is preamble to explain my reaction to the newest DSM-5 Diagnosis: Prolonged Grief Disorder. I literally cringed when the first email arrived in my box from Columbia University. The Center for Complicated Grief, a resource for clinicians and researchers, and a place I used often in my work, was changing its name. It was now the Center for Prolonged Grief. What followed were many more emails from other sources: some decrying the diagnosis, some applauding that grief was finally being given the attention it deserved, and some angry that grief had been labeled a “mental illness” instead of a part of human experience.
Prolonged is a cringe-worthy word. It implies that objective time is the key measure of when the process of grief is not working well. It suggests that one year, the standard chosen for definition, is a bar that divides those who are doing grief “normally” and those who are not. One team of clinicians advising the DSM board argued that they could tell at 6 months who was going to need intervention, but others felt that choosing that short a term would lead to even more backlash. No doubt both groups were right, because time alone is a poor measure.
I can think of many words I would have preferred. Ruminative; obsessive; non-productive; incapacitating; complex; yes, even complicated seems a better word to describe those folks who feel no better over time, despite their best efforts. They do not want to feel this way forever. They do not want even the most profound loss to destroy the ability to live the lives they have left. Telling these grievers that their feelings are “normal” or a “measure of love,” feels cruel to me. It may be helpful to those swimmers who are moving at their own pace, but it leaves the drowning with no life raft.
Grief is often combined with PTSD, when death is preceded by a horrific accident or illness; with Anxiety when fear of being alone is about competence or skills; with Depression when guilt calcifies alongside a loved one’s death. This is by no means a complete list, nor does it begin to address the childhood grief of Absence: the emptiness of unrecollected loss, or the gradual awakening to a relationship taken from you before you could even experience what it was.
Clinicians have always treated these, using other diagnoses, or just the catch-all Situational Disorder with Mixed Emotional Features. We recognize pain, and if we can, we find a way to help.
Will it help to give grief its own category? If it supports the research and development of intensive treatment models like the one developed at Columbia, then the answer is yes. We need more answers for those who feel stuck, are terrified of feeling this way forever, and for whom the unique individual path through grief has lost its way. Grief, like any normal human experience, can get off track, and deserves professional study, not just empathy.
But time is not the best measure of successful grieving. Grief is transformative. It changes who you are, who you were, and who you might become. The real work of grieving is exploring those change, and shaping them toward the future. You can never go back, only forward.
Progress is not measured in units of time, but in gifts and gratitudes, holding on and letting go, making peace and finding direction. Ripping your soul to the studs and rebuilding.
Death ends a life, not a relationship. Rebuilding your soul takes the time it takes. But when it is done, pieces of that relationship provide essential elements, and they shine. You have given them new meaning. And they, despite the pain they carry, have become the skeleton of your future, able to hold all the life that is yet to come.
This is excellent, Mary.