How long should grief last?
We have thoughts about the DSM-V's newest disorder.
Last week The New York Times published the article How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer. It’s about the recent inclusion of “Prolonged Grief Disorder” in the DSM-V, which was designed to apply to a narrow slice of the population described as incapacitated; pining; ruminating; and unable to return to previous activities a full year after a loss. Dozens of readers and friends have sent us this link, wanting to know our thoughts. As community builders in this area, we have…many.
As founders of two well-established communities for grievers, Modern Loss and Motherless Daughters, we have been working for years to help people connect with each other throughout the longevity of their loss and dispel the narrative that grief is something to get over, or leave behind. We also have suffered multiple personal losses, some at a young age. And we believe that promoting the need to shut off the valve of mourning after a certain period of time, and implying that a natural human experience is somehow unnatural, is outdated and potentially damaging to 21st-century mourners.
We are also, like many of you, deeply concerned that a medical recasting of the very human and universal experience of loss will adversely impact our society’s perception of how grief “should” be versus how it’s actually experienced.
Our belief is that grief is far too nuanced, textured, and dynamic to fit into a DSM diagnosis. To refer to this universal experience as pathological is unfortunate and implies that there is a “wrong” way to grieve. If the measure of our grief reflects the depth of our love or connection, then it is inaccurate and offensive to prescribe a time limit, whether enforced or implied.
When faced with grief, we must be able to feel like we can revisit, redefine, and talk about it for the rest of our lives. Adapting to major loss is a shifting landscape that each person must navigate. But nobody can “do grief” alone. We need each other, precisely because to grieve is to be human, and to be human is to be in relation with others.
The idea that grief is something to be “overcome” within a year is a 20th-century Western narrative. It was informed by psychoanalysis and the Modernist ideals of efficiency and progress, with an emphasis on getting people back into the workplace as quickly as possible. And it passes on a message that it is entirely up to the individual to pull him or herself up by their emotional bootstraps and figure out how to power through adverse situations on their own.
While it is true that 12 to 15% of people dealing with a significant loss will indeed suffer from what’s known as “complicated grief,” many of them will have been predisposed to depression or anxiety to begin with. The newly named PGD diagnosis is specifically for mourners like these, who are having enormous challenges going to work, maintaining relationships, feeling any sort of enjoyment, and even having suicidal ideation after a year. These individuals deserve validation and affordable access to professional treatment.
A majority of grievers, however, will find their solace in diverse modalities designed to support the bereaved, including social support, acknowledgment, and normalization of their thoughts and feelings. Our experiences have shown that when people have a safe, consistent, and non-judgmental place in which to share their stories and engage with others in similar distress, meaningful recovery results. Modern Loss community members are offered living examples of people who go on to live a life of meaning, joy and purpose alongside their grief, and are exposed to different coping mechanisms and cultural rituals that might be helpful in their own lives. Participants in weekly Motherless Daughters Community Calls are exposed to other women who’ve lost mothers and both find hope in their stories and they see how others can feel like they’ve taken two steps forward and five steps back. They feel as though their individual burdens are being divided and carried by many.
Words matter. When we call universal human experiences “complicated,” “abnormal,” or “prolonged,” we risk promoting a widespread cultural message that if you’re “not okay” or “still struggling” after a year, it’s time to see a doctor and get medication. We are concerned that a diagnosis of “Prolonged Grief Disorder” may encourage some mourners to bypass the critical importance of social support in a rush to seek a “quick fix,” when adjustment to a major loss is naturally a protracted process that may take the rest of a person’s life.
We anticipate this new PGD diagnosis could become grossly oversimplified and overused. We worry that people may be dissuaded from seeking out healing communal support or convince themselves that they have a “disorder” because things still feel really hard after 365 days. And we believe that some instances of these inevitable diagnoses could, in fact, be mitigated or even alleviated by communities like the ones we and so many others have started, such as The Dougy Center, The Dinner Party, and Black Folks Grieve.
Now, more than ever, grief is likely to be suppressed, protracted, or complicated because of the social, professional, and personal demands the pandemic has made of all of us. Some people can’t even begin to actively grieve for more than a year because of work, childcare, or their own health issues.These delays and complications disproportionately affect communities of color. In this respect, grief is a social justice issue.
As we struggle to emerge from the first global pandemic since 1918 – one that has killed nearly one million Americans and launched a grief pandemic that will surely be felt for generations – now is the time to give people more time to grieve, not less. Now is the time for us to forge communities of support and profound connection. Now is the time to let go of the cultural message to “overcome” an emotional experience that impacts body, mind, and spirit and come together instead.
We have a choice: Will we take a step backwards and allow grief to continue being perceived as an individual responsibility to be managed within a certain timeframe? Or will we do more to publicly promote it as a collective experience and encourage mourners to join communities full of others who have been forged in a similar fire and who may help guide each other through the long arc of it all?
— Rebecca Soffer and Hope Edelman
Hope Edelman is an author and founder of the Motherless Daughters community. Her most recent book is “The Aftergrief: Finding Your Way Along the Long Arc of Loss.”
Rebecca Soffer is cofounder of the Modern Loss community and author of “The Modern Loss Handbook: An Interactive Guide to Moving Through Grief and Building Your Resilience.”
As someone who received treatment for this 'diagnosis' before it was approved, I'd like to share my point of view. I had complicated grief. I had endured 5 significant losses in less than a year and was down for the count. This therapy saved my life - literally. It's a very specific protocol - and in fact, medication was contra indicated - as you can't medicate grief, it's a natural process.
I think the reaction to the terminology - which I completely agree with - may miss the point of this diagnosis becoming official. Because this was not an official diagnosis code, my insurance would not cover this therapy - making it an added struggle for me to find ways to afford it. Adding this to the DSM-V - is a way to make it easier for people to get the support they need. Putting the one year number on it allows the therapist to substantiate a diagnosis. It has nothing to do with the what you learn in the therapeutic process. Which is that grief never goes away, your feelings are totally normal. It's quite the contrary to a lot of the understandable backlash, The backlash is to the terminology - the therapy is aligned with all of the points you make. The therapy for prolonged grief is a way to honor and integrate your feelings so you can function. In no way does it ever tell you to get over anything or even move on. Quite the contrary. It honors the loss. It helps you work through the feelings, with the goal of being able to continue living with the loss - not forgetting the loss. I think sadly, the reaction here is to a diagnosis code, and not a very valuable method of support for people who really need it. The bigger picture of how our society deals with grief is a topic that desperately needs to be addressed. Thank goodness for platforms like this where people can find community and healing.
And for pro-longed grief being an official diagnosis so more people can get the professional support they need. As a final note: a friend of mine lost her sister last year -tragically to a murder. She is still in deep grief and her insurance would not cover this therapy - until now. This is a lifesaver for her.
We lost our 30 year old son to a sudden pulmonary embolism just over 3 years ago. I returned to work very quickly as a way to force myself to focus on something outside of my personal pain. The idea that grief is something to overcome or put behind us is absurd to anyone who is experiencing it. The only people I know of who hold those opinions are those who haven't suffered the kind of loss that my wife and I and others like us have experienced. They just don't get it. My response to them fluctuates between rage and attempted patience, depending on my mood at the time. The bottom line is that it is high time that all of us do our best to accept everyone else for who they are and where they are in their journey through this life. My personal feelings know no calendar: all they know is that my son isn't here.