"True empathy is always free of any evaluative or diagnostic quality"
- Carl Rogers
Yes, this time, the psychiatric system has gone too far. Again.
They've taken what is sacred and they've desecrated it.
A few very persistent scholars have finally succeeding in declaring that expressions of grief extending beyond six months to one year are indicative of a pathology- yes, an actual mental illness- called 'prolonged grief disorder' (PGD), now ensconced in both the Diagnostic and Statistical Manual (DSM-5 TR) and the International Classification of Diseases (ICD-11).
This move offends many, from grassroots organizations providing care to grieving people for decades to individual grievers themselves to scholars and clinicians in the field (watch our round table discussion here and read Dougy Center's Donna Schuurman's response here).
The purported goal is to ensure that grieving people with ongoing 'symptoms' of grief that "impair functioning" get the 'treatment' they need.
Yes, absolutely, grieving people need care, support, compassion, and connection. I'm just one of many people in the world who has been actively volunteering (for more than 25 years) to help those affected by traumatic grief. However, a diagnosis of mental illness, in my opinion, should be unnecessary for such help when your beloved child or children die, when your 40 year partner dies by suicide, or your 50 year old mother dies during a pandemic and you never even had an opportunity to have a funeral. Why? Because I believe that grief after catastrophic loss is not a mental illness.
So, let me go point by point detailing my opposition to this move.
Point one: There has existed this attempt to medicalize grief since the 1990s, and the 'term' for this 'disorder' has been iterated and reiterated; same with the criterion, and yes, I've been voicing my disdain for this plan for years about PGD and other relevant dx changes.
Intense yearning and preoccupation with the deceased (primary symptom)
Plus at least 3 of 8 of the following:
Identity disruption ("feeling as if part of oneself has died")
Difficulty moving on
A sense that life is meaningless and
Avoidance (this marker is actually truly problematic for grievers when sustained. I have written extensively about this for decades. Many teachings in Eastern philosophy, of which I am a practitioner, actually provide practices that help us work with aversion and avoidance. There is no need to term this as 'disordered' particularly when Western culture is so grief and griever avoidant to start. Those messages of "DON'T FEEL" anything but good feelings are internalized. Not the griever's fault... society's fault. Let's start by fixing society's grief avoidance disorder. For example, in 2015 when Nationwide ran a Super Bowl ad that dared to intimate that a child died (and was called the "most controversial Super Bowl ad"), and public outrage was so vociferously vitriolic that people lost their jobs. The ad was never to be aired again. There's our problem, right there. No one wants to ruin a good party thinking about grief or children dying).
And who gets to judge what is excessively intense emotional pain or the arbitrariness of the one-year marker or the definition of "moving on"?
I conducted a study with colleagues in 2014 and found that the vast majority of bereaved parents had clinically significant symptoms, likely to put them at risk of a mental illness diagnosis, more than four years post loss. If the majority of grieving parents experience these symptoms more than four years later, perhaps they are normal and our measures, and expectations of them, are abnormal.
Point two: A noble lie is still a lie. Many of my psychiatrist and therapist friends have capitulated that this move is solely so insurers will cover therapeutic services such as counseling or medications. Of course people may benefit from (very good) counseling. But in what legitimate field can you create or misdiagnose an illness just for payment? Is it ethical for an oncologist to diagnose brain cancer when a patient has liver cancer simply because the former is covered by insurance? Really smart people, and the powerful institutions they represent should, rather, lobby insurance providers to pay for supportive counseling and care that is not predicated on a fictitious diagnosis.
Of course, grieving people do need support. They need the right kind of support that does not stigmatize them, as grievers, and does not further the very dangerous myths in society about what normal grief is and isn't. Which leads me to my next subpoint: this diagnosis is more stigmatizing than suicide bereavement according to this study that notes, "Notably, only persons with PGD were attributed relatively more negative characteristics, and elicited... a larger preferred social distance in participants." Remember that loneliness is one of the criteria for PGD. Hmmm. Creating one of the very conditions of the diagnosis while simultaneously inciting self-mistrust in grievers and negative self-cognitions about grief. Curious and seemingly unhelpful.
Point three: Speaking of negative cognitions about one's grief, these negative self-thoughts are often exacerbated by societal attitudes and marginalization of grievers. Negative grief cognitions "was the only variable predicting membership of the PGD-class" in this study. Literally, negative thoughts about grief predicted PGD. Clinicians who listen to the stories of those suffering life's most tragic losses know how others often avoid grievers in grocery stores, berate their sadness and sorrow, and say some of the most psychological violent things to them, a form of chronic microaggression toward grief and griever. No wonder so many grieving people feel lonely and empty. Loneliness, a social determinant of health, takes a toll on our well-being. I feel, based on the evidence, that labeling grievers as mentally disordered at six months or one-year post loss (btw, occurring during a time of common 'anniversary reaction') will increase negative grief cognitions and thus social constraints, a very dangerous move for emotional and physical health (see Juth et al), threatening to increase their sense of loneliness. We are endangering an entire subset of the population because of perverse social norms, and societal oppression of grievers may well increase as the myths about grief deepen.
Point four: Many animals have been documented to grieve and experience intense emotional pain, suggesting a normal, evolutionary response to tragic loss. Tahlequah, the pilot whale, carried the body of her precious baby, with the aid of her pod, through the ocean for 17 days over more than 1000 miles while the world watched in shared sorrow and awe. She didn't give birth again for almost two years. Charles Darwin wrote about the emotional life, including grief, of animals. Note that, "scientists have documented some form of “death response” in seals, manatees, dingoes, horses, dogs, housecats, and more. Striking examples include 27 adult giraffes holding a vigil for one dead baby giraffe, elephants from five different families visiting the bones of one of the dead, a group of 15 dolphins slowing their speed to escort a mother dolphin carrying her dead calf, and a strange case of two ducks rescued from a foie gras farm who formed a friendship at their sanctuary home. When one duck died, the other lay with its head on the others neck for hours" (BBC Earth). Is the view of grief as pathology actually a contradiction of evolutionary theory itself?
Point five: The American Psychiatric Association used the same rhetoric of "impaired functioning" and "subjective distress" back in the 1970s during a (shameful) period when homosexuality was a diagnosable mental disorder. In a 1973 New York Times interview with then president Dr. Robert Spitzer, Dr. Irving Bieber said that in order for homosexuality to be a mental illness, it had to "regularly cause subjective distress or regularly be associated with some generalized impairment in social effectiveness or functioning." The same rhetoric being used now for PGD. He continues, "If these (homosexual) children are treated, and their parents are treated, they won't become homosexuals." Magically, and righteously, homosexuality was excluded in the DSM IV as a mental disorder. Today this rhetoric is the same; the strategy similar; the marginalization of a vulnerable group, predictable and enraging, yet again. Like grief, homosexuality is not a mental disorder. Why did they remove it? Simply, political pressure. Outraged voices threatened to delegitimize the nomenclatural system, and rightfully so. And as a result of the removal of homosexuality from the DSM IV, "cultural attitudes about homosexuality changed in the US and other countries as those who accepted scientific authority on such matters gradually came to accept the normalizing view. For if homosexuality was no longer considered an illness...what moral and legal principles should the larger society endorse in helping gay people openly live their lives?" (Drescher, 2015, p. 570).
We can - and should - do better for grieving people too.
Point six: Drugs for grief are on their way. But there is no pill that can cure grief. There are pills that can numb emotional pain, both street and prescription. There is booze for that too. And gambling. And over-consumerism? Don't we have enough mess already? And none of these chemicals or distractions help us actually integrate or build resilience or learn to cope. These are simply momentary satiations that come with physical, social, emotional, economic, and psychological risk. Currently, there exists a study at Cornell Weill Medical School testing the addiction drug, naltrexone, to treat this purported new disease, PGD. I first discovered this funded study about a year ago while looking for grants for my own work. Disturbed by what I was reading, I shared with esteemed colleagues who reflected back my concerns. Namely, researchers assert that PGD can be "conceptualized as a disorder of addiction, and therefore could benefit from being treated with medications that are currently used to treat such disorders."
Wait. What? Yes, that's what it says.
You are basically addicted to your person who died.
And you're rewarded for thinking of him/her/them, so this will ameliorate that reward by affecting the dopaminergic pathway (so much for the meditations I teach inviting the dead back into our hearts). The document continues to note that the goal is to "promote grief symptom resolution." To that end, the mechanism of action is a sense of disconnection to "one's closest others", meaning they know (and want) the drug to sever the griever's sense of social bonding. No, I'm not kidding (remember that loneliness is a marker of PGD). Here is the direct quote:
"First, assuming that having and maintaining social connections is vital to human functioning, the opioid theory of social attachment suggests that endogenous opioids are released during these experiences of social bonding, which then underlie the pleasant feelings of social bonding to positively reinforce the formation of such bonds. Based on this theory, studies have shown that naltrexone reduces feelings of social connection, especially to one’s closest others (21, 22). Reduced positive associations with signicant others, especially the deceased, may make bereavement feel less lonely and isolated while diminishing the reward derived from reminiscing about the deceased. Second, meta-analysis conrms that naltrexone reduces craving in patients with alcohol dependence (23); in PGD, craving the deceased is the core symptom 2017 (5). Thus, naltrexone may reduce the craving for the deceased, and thereby severity of PGD. Given these findings, we predict that naltrexone will provide a pharmacological way to dampen the benefits of social bonding while reducing the yearning or craving for the deceased loved one, which would reduce the severity of PGD."
Imagine a mother of three whose youngest child dies of cancer. She takes naltrexone which abates her intense sense of connection to her child who died... and to her other children. This is a desired mechanism of action? Sounds quite risky to her living children, even if she did want to disconnect from her child who died (which, I assure you, is quite rare). Imagine feeling socially disconnected from all your potential sources of support in the aftermath of catastrophic loss. A drug that severs a sense a social bonding cannot target just one person, the person who died. It will affect all social connections. I'm not even sure how this passed an ethics review.
If this proposal makes sense to you, then feel free to explain this to me because from where I am, this is a terrifyingly dangerous proposition that teeters on the edge of social discrimination. In addition, already vulnerable BIPOC groups, who are grieving, may be at even greater risk because social connections are the basis of survival in an oppressive and prejudicial world. My colleagues and I wrote published our concerns and a critique of this study in a peer reviewed paper in May of 2022.
For now, you need to know what is happening and how this could potentially affect future drug development to 'treat' PGD.
And you need not buy what this peculiar system is selling if you're a grieving person. You can reject this notion and reclaim your grief emotions. In fact, its long past time for such a reclamation, as I note in this Guardian article. Our grief is ours, holy and sacred, inviolable. Reject anything that, as Walt Whitman says, "insults your soul." If you're seeing a GP, therapist, or psychiatrist, ask what code they are using to bill your insurance company. Adjustment Disorder, while offensive, is probably less stigmatizing; or some offer a sliding scale for cash paying patients. In that instance, you have the right to insist that no diagnosis of mental illness is written in your medical records, if that feels right to you.
It's also long past time to decolonize the system of "mental" health (which should be inclusive of emotional, social, and intergenerational health). I've called for a decolonization of systems of grief for two decades; indigenous researcher Renee Linklater recently wrote a book called Decolonizing Trauma Work. I highly recommend it. We need to teach competent grief care in medical systems, grief intelligence in schools, grief compassion in churches, synagogues, temples, and communities. We need to learn, as a society, how to (as Ram Dass says) 'walk each other home.' That should be the foci before we pathologize grievers.
Many sage voices are calling for a change.
So, I raise my voice up with theirs. Again.
And Havi's mom raises her voice in the video below.
You, too, can raise your voice...
I have other points to share, including the cultural norms and mystical notion of (what modern day scholars call) continuing bonds theory, but this is getting rather lengthy, and these are the main tenets of our opposition to what has happened.
It's not the first time I've protested, and it won't be the last. I'll use my voice every opportunity I have to sway public opinion and the scholarly realm around this issue.
Most importantly, I'll continue to, one by one, do my part in really helping grieving people and simultaneously I will render the most important harbinger of all: Be careful with whom you entrust your grief. Do not offer what is sacred to those who would desecrate.