The New “Disorder”–PGD Prolonged Grief Disorder

The new disorder AfterTalk Grief Support

 

Grief is love’s conjoined twin. Without love, there would be no grief.

And if love is not a disorder, illness or diagnosis, neither is grief.

 BY ALAN D. WOLFELT, PH.D.

Our phone at the Center for Loss and Life Transition has been ringing off the hook in recent weeks with requests for my opinion of the new “PGD” diagnosis. Yes, every- one’s talking about the new “disorder” included in the latest release of the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5). Psychiatrists and other mental health professionals can now, at their discretion, diagnose an adult patient with “prolonged grief disorder” (PGD) one year or more after the death of someone loved (just six months for children).

According to the DSM, prolonged grief disorder is characterized by daily, intense yearning for the person who died and/or a preoccupation with thoughts or memories of this person. Three additional symptoms from the following array are also required: identity confusion, disbelief, avoidance of reminders of the death, intense emotional pain, difficulty engaging with others and with life, emotional numbness, feelings that life is meaningless and intense loneliness.

According to recent studies, say the experts who lobbied for the inclusion of prolonged grief disorder in the manual, about 1 in 10 grievers suffers from PGD.

MY POSITION IS THIS: I DISAGREE.

I’ve been a grief counselor and educator for more than 40 years now. I’ve spoken and worked with thousands of grieving people. These are the essentials they have taught me:

  • Grief is normal and It’s simply love after loss.
  • Because love doesn’t end, neither does grief.
  • The normal melancholy of grief often continues well beyond a year. To integrate it into our ongoing lives, grief takes expression (i.e., mourning), the support of others and an indeterminate amount of time.

Here’s another way to think about it: Grief is love’s conjoined twin. Grief is what we feel when we are separated from the object of our love. Without love, there would be no grief. And if love is not a disorder, illness or diagnosis, neither is grief.

I’ll say it again: Grief is not a disorder. In my experience, even grief meeting the criteria set forth under “prolonged grief disorder” in the new DSM is not pathological. If it were, most of us would be diagnosed with PGD at some point in our lives. Historically, we better understood that Thomas Kempis was right when he observed that if you live very long on this earth, you will experience some “proper sorrows of the soul.”

Pathologizing Grief and Mourning

Mourning is grief gone public. It’s the outward expression of our inner thoughts and feelings of grief. It’s our shared social response to loss. Whenever we cry, talk about our grief or in any way express our anger or sadness or shock or any other thought or feeling about a loss, we’re mourning. And mourning, like grief, is necessary. Mourning is what allows us to ultimately reconcile our grief and find our way to a new normal.

Unfortunately, some in our culture have decided that open and honest mourning is inappropriate and improper. Many mourners are pressured to keep their normal and necessary grief inside. Spoken or unspoken, messages such as “carry on,” “keep your chin up” and “keep busy” all too often prevail. That’s why I and other authors often refer to North America as an “emotion-phobic” or “mourning- avoidant” culture.

I would say that even the inner experience of grief has been tainted by this thinking. We are told we have a right to happiness. We are told that emotional and spiritual pain are bad and that we deserve to quell them as quickly as possible. But if sadness is mal- adaptive, then grief is also maladaptive, right?

No wonder we ended up with grief and mourning too often being considered illnesses. No wonder we ended up with this unfortunate diagnosis.

Complicated Grief

We all need the support of others if we are to reconcile our grief and go on to live a renewed, full life of love, meaning and purpose. But sometimes we need extra help. In those situations, I call it “naturally complicated grief.”

First, let me clarify that I believe all grief is complicated. Just as love is always complex and multifaceted, so, too, is grief. When someone we love dies, we naturally have lots of different and ever-changing thoughts and feelings about the death. Grief is often profoundly challenging and chaotic. In fact, it’s common for grievers to feel like there is something wrong with them because their inner experience of the loss and their outward behavior are so different from their usual thoughts and feelings.

The experience I’m calling “naturally complicated grief ” is grief that has gotten extra complicated somehow. It’s a matter of degree, feature prominence, and sometimes, yes, duration.

My professional experience has taught me that complicated grief is grief that has gotten stuck or off-track somehow. It has encountered barriers or detours of one kind or another and as a result has become stalled, waylaid or denied altogether. It is not, however, abnormal or pathological. It is not a disorder. Instead, it is a normal response in what is almost always an abnormally challenging loss situation.

I use the word “complicated” to describe stuck, off-track or denied grief because it better honors the unavoidable spiritual challenges of human life. It’s also more hopeful. If something is complicated, you can tease it apart and make your way through. What’s more, it’s not the human being who’s “disordered” – it’s the potential convergence of numerous factors that can contribute to the complications of grief. I have found that we often label things “disorders” when we lose an understanding of them.

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TAKING BACK OUR GRIEF

A few years back, I proposed an initiative I called the Slow Grief movement, which acknowledges that loss is as much a part of the human experience as love is. It recognizes that loss changes us forever and that grief is a normal, necessary and slooowww process. It also proclaims the need for people to express their grief and be supported by their communities and asks us to look to the past to recapture the healing wisdom and customs we’ve almost lost.

In this movement, grief should be removed from the purview of medicine altogether. Let’s strike it from the list of illnesses and take it back as a normal, natural and necessary spiritual process that in fact fosters wellness. The Slow Grief movement also supports caregiving that is as slow as the mourner needs it to be, as well as heart based.

If you’d like to share your thoughts about “prolonged grief disorder” or the Slow Grief movement, I invite you to write me at drwolfelt@centerforloss.com.

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Caring For Vs. Curing

Under the traditional medical model, the aim is to cure disorders. Curing is a medical term that means “remedying,” “correcting” or “eradicating.” Yet grief is not an illness. It’s a normal human response to being “torn apart,” which is what the word “bereavement” means. It can only be cared for.

Caring is about honoring a transformation of the heart and soul. Caring is about being a companion who walks alongside – not in front of – and accompanies grieving people as they find their way out of the darkness and into the light.

Grief therapists do need frameworks that help them understand, identify and support grievers struggling with com- plications of their grief. If you’re interested in the companioning model of complicated grief care, I would refer you to my book, When Grief is Complicated: A Model for Therapists. 

While the difference between “prolonged grief disorder” and “complicated grief ” may seem like semantics, it’s more than that. First, the term “prolonged” implies that one year is sufficient for deep grief, but this is an arbitrary cutoff. The truth is there is no timetable to healing in grief. Besides, working toward reconciling grief waits on welcome, not on time. Second, the term “disorder” shames grievers at the very moment when what they need most is affirmation, empathy and compassion.

I agree that stasis in grief is ultimately not tenable or healthy. While it’s normal to get stuck now and then and even go backward in the healing process, symptoms that don’t soften over the course of years are actually signs that the mourner would benefit from extra support. Still, even those mourners who do reach out for additional support are not dis- ordered. They are not experiencing pathological grief. Yes, they are struggling, usually because of circumstances with which anyone would struggle. In these situations, seeing a compassion- ate, grief-informed therapist can often help get mourners unstuck and aid them in regaining healthy momentum toward integration of the death into their life.

I believe the pathologizing of grief is a profound error in judgment by the American Psychiatric Association. The decision is a form of secondary victimization of those experiencing grief as it increases stigmatization and at- tacks the very core of the mourner’s self-esteem.

In a culture that lacks an understanding of the “proper sorrows of the soul” and perceives grief as a medical condition re- quiring “treatment” (the pharmaceutical companies must be celebrating), it becomes impossible to view mourning in a way that honors its inherent wisdom. Grief invites the mourner to slow down, not speed up. It invites the mourner to befriend pain, not deny it. Now there is increased risk that a person will go to their physician (often not grief-in- formed) 12 months after a death, acknowledge being in the wilder- ness of grief (“intense emotional pain”) and be prescribed a pill to lift their spirits.

This new, timeline-defined “disorder” gives the false im- pression of being “hard science” when it is actually naïve and misinformed and reinforces that notion that the dark emotions that come with deep grief are essentially taboo in our culture.

I hope you’ll join me in the rejection of grief as pathology.

NOTE: Dr. Wolfelt has initiated a petition to oppose and remove the “Prolonged Grief Disorder” diagnosis from the DSM-5-TR. If you’d like to sign the petition, please visit HERE.

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