What’s the Deal with Prolonged Grief Disorder (and why should you care)?

PROLONGED GRIEF DISORDER! It’s everywhere - social media, The New York Times, The Washington Post… it’s the hot new medical condition everyone’s talking about. But why is everyone so mad about it? 

This week on the show, an overview of this hotly contested “new” human disorder, and what it means for the average person, for healthcare providers, and honestly - for the whole world. This is one medical diagnosis that affects everyone. 

Want your questions answered on the show? To submit your questions by voicemail, call us at [phone] or visit megandevine.co

In this episode we cover: 

• Why anyone should care what the APA thinks about grief
• The actual diagnostic criteria for prolonged grief disorder (translated from psych-jargon into the way real people speak)
• Access to care + funding for research: two of the main reasons people think this diagnosis could be helpful (and why it isn’t) 
• The real world impact of the DSM: doubling down on shame and misunderstanding
• Why launching new rules about how long it’s ok to grieve is more than a bit problematic while we’re still in the middle of a mass death and mass disabling event (aka the pandemic)
• One surprise reason this diagnosis *could* be seen as a good thing

Click here for the episode webpage

Notable quotes: 

“Grief makes you less productive, and what we value above all else is productivity.” - Megan Devine

Questions to Carry with you: 

Read up on the unfolding public conversation about prolonged grief disorder - how do *you* feel about it? Let us know! Call us at [phone] or visit megandevine.co

Additional resources

For an interview with both Megan and the author of the NYT article, Ellen Barry, on WGBH TV Boston, click here. 

To read Megan’s more detailed response to the NYT article, including tweet-by-tweet takedowns of most of the major “pro disorder” points, check out the original Twitter thread, and the extended thread. Versions of these threads are also on the blog. 

Want to read even more about our culture’s deep avoidance of human emotion, and all the ways that messes with day to day life? Maybe more important, want to know what’s actually normal inside grief? Check out Megan’s best-selling book, It’s OK that You’re Not OK, and follow @refugeingrief on IG/FB/TW 

We recommend you check out the Perfectly Normal campaign, serving up just the validation you need when you’re feeling like the only person in the world doing that “weird” thing you do. 

Therapist, clinician, or other healthcare provider? Be sure to check out upcoming trainings that address PGD and re-humanizing grief. Follow Megan Devine on LinkedIn, too. 

Other articles on prolonged grief disorder include Medicalizing Grief May Threaten Our Ability to Mourn

Get in touch:

Thanks for listening to this week’s episode of Here After with Megan Devine. Tune in, subscribe, leave a review, send in your questions, and share the show w

Episode Transcript

Speaker 1 (00:00):
This is here after, and I'm your host, Megan Divine.
Each week we tackle big questions from educators, nurses, and
other helpful folks that let us explore how to show
up after life goes horribly wrong. This week prolonged grief disorder.
Oh my god's prolonged grief disorder? What is even happening?
Why is the media talking about it? Why are all

(00:21):
of our social media channels lit up over prolonged grief disorder?
This is your I am trying to be brief answer
multiple questions overview of this new new and er quotes
human disorder and what it means for the average person,
for healthcare providers, and honestly for the whole world. Coming
right up after this first break, before we get started,

(00:50):
one quick note, Well, I hope you find a lot
of useful information in our time here together. This show
is not a substitute for skilled support with a licensed
mental health provider or for prof nationals provision related to
your work. One more disclaimer. Discussions about prolonged grief disorder
get hot, really really fast. So if you're gonna at me,

(01:11):
just you know, use some communication skills and don't be
a jerk. The other thing though here is I do
want to say that I am not an expert in
prolonged grief disorder or the d s M or the
family medical lead up all things we are going to
be talking about in today's show. Friends. Okay, so I
don't know if you saw it, but The New York

(01:32):
Times recently ran an article with the super unfortunate title
how long should it take to grieve? Psychiatry has come
up with an answer. Okay, something y'all might not know
is that journalists and writers do not usually get to
choose the titles that accompany their pieces. So whoever the
journalist is for this article, sorry they did that to you. Anyway.

(01:53):
This isn't the first time a major media outlet has
reported on prolonged grief disorder. They usually poured on it
with this like deeply alarmist tone. This is the second
article about prolonged grief disorder that The New York Times
has run. Their first one, at least the only one
that I'm aware of, was in late at the end
of Scientific American ran an article with a headline that proclaimed, quote,

(02:17):
the whole world is at risk for the prolonged grief
disorder because of the pandemic super not helpful phrasing with
a bit of a better angle. This past fall, the
Washington Post ran an article hoping to educate people about
what the diagnosis means, why it's recently been added to
the d s M. The d s M is the
Diagnostic Statistical Manual. It's basically a big old catalog of

(02:39):
things that go wrong or get dicey during the course
of being a live human being. We're going to get
into the d s M, what it is and how
it's used a little later in the show. But back
to the New York Times article about prolonged grief disorder.
There was such a huge uproar surrounding that article, including
full disclosure my own Twitter rent that has so far,

(03:02):
so far spanned several days. We figured that a show
at least starting a conversation about prolonged grief disorder should
get moved to the top of the production queue. Articles
like this raise so many questions. To be honest, everybody,
I have avoided a show about prolonged grief disorder. It

(03:23):
is a super complicated, super messy issue and it hits
all of my outrage buttons. So I have just tried
to grumble about it a little bit when it pops
up in my media feeds, and then just like go
distract myself with something else for a bit. But I
can't keep doing that. This whole disorder lens on grief
does such damage not only to people who identify as grieving,

(03:46):
but also to the friends, family, clinicians, and medical providers
that come across grief in their social and professional worlds.
This is a good time to remind you that that
little description that I just gave applies to pretty much everyone.
Everyone is grieving. It doesn't matter if it's from death

(04:08):
or illness, or job loss or a loss of the
sense of the world as a good, orderly, reasonably safe place.
Grief is everywhere. So this week on the show, I'm
going to do my best to do a rapid fire
Q and a whistle stop tour of prolonged grief disorder.
What it is, how the diagnosis is used in both
the perfect world and the real world, why people are

(04:32):
so mad about it, and hopefully maybe why you should
maybe be mad about it too. We will definitely have
more shows addressing different issues related to the diagnosis of
prolonged grief disorder. So consider this just like part one
of I don't know how many parts. Let's get rolling.
I'm going to do my best here, Folks who not

(04:53):
kidding when I say that I get hot about this stuff?
All right, really quickly? A short orientation to prolonged grief disorder.
This is a diagnosis that's been under debate, and I
mean hot debate for the last ten years or so,
with people fighting ferociously on both sides. The official entry
of the diagnosis or the disorder into the Diagnostic Statistical

(05:15):
Manual that d s M. I mentioned, that's already happened.
It is already in there. So the period for debate
about whether that diagnosis is in or out over the
fight about it, or more precisely, the fight against it,
is ongoing. Okay, so what is it? Prolonged grief disorder
is a new diagnosis created by the American Psychiatric Association

(05:37):
that describes a quote maladaptive response to loss. Usually that's
a laws do you to death. In order to receive
the diagnosis, somebody must be at least six months past
the initiating event a death, and they must be quote
experiencing persistent and pervasive longing for the deceased and or
persistent and pervasive cognitive preoccupation with the deceased, combined with

(06:01):
any of ten additional grief reactions indicative of intense emotional
pain again for at least six months after bereavement, also
known as the loss. Okay, who, let's define some terms here,
because that is some jargon. Pervasive cognitive preoccupation literally means
you are thinking of the person who died pretty regularly

(06:23):
since they died. Persistent and pervasive longing part two of
the diagnostic criteria. Persistent and pervasive longing for the person
is psychiatry speak for you miss them and you wish
they were still here. So in addition to one or
both of those two things, you just need one more,
as they say, grief reaction indicative of intense emotional pain

(06:46):
to qualify for this prolonged grief disorder diagnosis. So things
on the list of those ten additional grief reactions indicative
of intense emotional pain. I am not making this up, everybody,
I'm reading it off of the official diagnostic criteria. So
these ten things include sadness, guilt, anger, denial like having

(07:09):
a hard time reconciling that this death is real, like
difficulty accepting the death, feeling like you've lost part of
yourself in this loss, an inability to experience a positive mood,
emotional numbness, and difficulty engaging with social or other activities. So,
according to this new diagnosis in a manual that goes

(07:29):
out to all clinicians and all medical providers, if you're
still sad about somebody's death six months after they've died,
you really really miss them. You think about them all
the time, and you're having a tough time bouncing back
to your happy, positive party predeath self. You have a disorder.
You can probably hear it, but I have a really

(07:53):
hard time controlling my fury even just reading those criteria.
I am going to try to keep it can tained
for the purposiness of our show at least today, and
get through this general overview with some questions, but I
do gott to note that it is hard hard for
me to keep it together. I want to address why

(08:13):
anybody should care what the A p A or the
d s M thinks about grief. I mean, realistically speaking, here,
no governing body can tell you how to feel or
mandate required emotions for anything. But here's the thing. The
way the medical industry talks about grief has a direct
impact on the quality of care and support a grieving

(08:34):
person receives, and the opinions or the edicts of the
psychiatric industry actually trickled down to the wider public understanding
of grief. If the medical industry says that missing your person,
still missing your person, still feeling sad, still talking about
them six months after they've died, If the medical industry

(08:55):
says that that's a problem, then the general population believes
it's a problem. Um. If the medical industry officially says
that grief is a disorder, then we all believe it's
a disorder. There's sort of this like trickle down pathology
that happens from the medical world into popular culture. So
when a major medical industry releases their quote Prolonged Grief

(09:18):
Disorder diagnostic criteria, and then major media outlets report on
that diagnostic criteria, that all feeds into this belief we
still have in Western culture that grief is a problem
to be solved, that sadness is unhealthy, and that bouncing
back to a productive, happy, positive outlook is the only

(09:38):
healthy response to loss. I mean, this is the whole
reason I do the work that I do right, friends,
is the whole reason for the podcast and the books
and the education and the training and all of it
is to kick over those outdated ideas about what it
means to be human, because those beliefs that being human
is somehow faulty is like the whole problem. There might

(10:03):
be a lot of nuance to the diagnosis, which were
totally going to touch on in a minute, but basically,
if your doctors as grief as a disorder, then the
best thing we can do for people going through hard
times is listen to the medical profession and cheer people up,
get them to be less sad, and probably suggest that
they quote get help for their disordered emotional responses. I mean,
that's not just like me over reacting to things. We

(10:26):
can back up all of this with recent real world experience.
Over the last three days, I've received hundreds of messages
from people saying that well meaning friends and family actually
sent them a link to that New York Times article
on prolonged grief disorder, often accompanied with messages saying things

(10:46):
like I knew you shouldn't be sad after all this
time read this article. Maybe you should go get some
help weaponizing prolonged grief disorder, to shame, judge, ad eyes
and correct people going through the hardest times of their
lives under the guise of medical advice. And I return

(11:07):
to health. So while it can seem like a diagnostic
code used in a manual by clinicians has no actual
real world impact, I am here to tell you wholly everything, everybody,
It has so much impact. Now the impact of diagnoses
on the general world is a totally other, big topic

(11:28):
for another day, because I want to, as briefly as
I can, remind you that no matter what anybody says,
grief is a healthy, reasonable response to loss. It's not
going to be over in six months or a year
or eighteen months. Grief lasts as long as love last,

(11:48):
and there's nothing wrong with that. On that note, we
were going to take a very quick break. I'm gonna
drink some water. Hydration is important when you're feeling outraged,
and we'll be back. Welcome back, everybody, okay, Continuing with

(12:11):
our quick fly over drive by orientation to prolonged grief disorder,
Why do we even have the disorder? That in itself
is a major topic, And as I've said a number
of times, we will get into that in other shows,
but for now, calling grief a disorder is an outgrowth
of our grief. Adverse emotions are bad get back to

(12:33):
work as soon as you possibly can culture, which is
to say that prolonged grief disorder as a diagnosis is
an extension of capitalism. Grief makes you less productive, and
what we value above all else is productivity. As you
know from listening to previous shows, we have a long

(12:54):
history of avoiding emotional pain, so that actually underlies a
lot of capitalism, or it's at least like the twin
of capitalism, avoiding all human things so that we can
be more productive like that. You know, capitalism should actually
be in the DSM, but that is also a subject
for another day. Oh, I can already see the the

(13:15):
twitter responses. I'm going to get for that one anyway.
The d s M that manual we've all been talking
about is written for the insurance industry. Little known fact
that you might not know if you're outside of the
medical industry. It's a collection of conditions that insurance companies
will or will not pay for, meaning they'll pay your
therapist or your doctor to treat a condition as long
as it is detailed in the d s U. With

(13:39):
the current US health care system, you actually can't get
help from a doctor or therapist for something like depression
or anxiety. You can't get help within the U S
health care system if you weren't broken broken in our quotes.
So we need there to be something broken in you
that we can fix. This leads us to pushback number one,
where people say, like actually having grief an official diagnosis

(14:02):
or disorder in the d s M is a good thing.
If we normalize this very normal human experience, if we
say it's not a disorder, this is a normal thing.
If we say that, then insurance companies won't want to
pay for treatment or support or therapy, because remember what
I just said, in the current US healthcare system and
in some other health care systems around the world, you

(14:25):
can't get support, treatment, therapy if there isn't something wrong
with you. So we need to say there's something wrong
in order for you to access care. If you don't
get a diagnosis inside your grief, it means that some
people won't be able to access care if they aren't
labeled with the disorder. So this is one reason, as
I said, that people are in favor of the prolonged

(14:45):
grief disorder diagnosis. They say it's going to let people
gain access to therapy and other support. So when a
couple of people yell at me for not supporting the
grief disorder diagnosis, they're saying that people need it in
order to access services. Now my response here is like, yeah,
that is in many cases true. That is the function

(15:06):
of the capitalistic insurance based system where you need to
have a disorder in order to access care. But I
would much rather re focus on getting insurance companies to
reimburse for therapy and support just because being human is hard.
Sometimes not you only get paid to go to therapy
because being human is a disorder, you know what I mean.

(15:29):
In the meantime, we do have the system that we have,
so that means we do need a diagnosis very often
in order to unlock access to therapy and other supportive resources.
But we do have other, less shame based diagnoses we
can give people in order to unlock that care. We
really didn't need yet another way to shame and deride
the human experience. Actually, somebody on Twitter had a really

(15:52):
good point. They were like, this diagnosis or this new
disorder is just one step closer to making the human
experience as a whole up pathology. Yeah, that is where
we're going the robot army approaches. Okay, what about the
Family Medical Leave Act? Doesn't getting a prolonged grief disorder
diagnosis get you that Family Medical lev Act protection? Now

(16:13):
I am not an expert in the Family Medical Leave Act,
but I can say that fm L a Family Medical
Leave Act, it doesn't typically cover bereavement. You can often
get family medical leave while you're caring for a terminally
ill family member, but once that person dies, family medical
leave stops. They figure you're going to rely on your
company's bereavement policies, which is a problem since there is

(16:38):
no law saying that your company has to give you
bereavement leave, and many of those company policies are for
very specific family members. So if you've been tending to
your best friend in their late stage cancer and then
they've died, like forget about it, you're not covered by anybody.
Even if you have a good bereavement leave policy in
your company, those things typically just cover a couple of

(16:58):
days off three five. Some people might even get a week.
Now you can use family medically for some mental health conditions.
So technically a prolonged griep disorder diagnosis might unlock family
medical leave in some situations. But I want to point
out something really really important here. A diagnosis of prolonged

(17:21):
grief disorder can't happen without that prolonged bit. By definition,
you can't get a diagnosis of prolonged grief disorder until
at least six months post loss, which means even family
medical leave wouldn't come into effect in the early days
and weeks after somebody dies, which is often when people

(17:42):
need grief support the most. So that argument that we
need the diagnosis or the disorder of prolonged grief disorder
in order to unlock family medical leave absolutely not relevant.
It can't even happen until six months after the death.
And then, just to throw one last complicating wrench into
the works, I just want to show you how truly

(18:04):
complicated this entire thing is. I'm going to give you
an argument for prolonged grief disorders showing up in the
d s M. Just messing with the world here. This
is precisely because we live in such a grief of
verse culture where grieving people find it really hard to
get support and understanding from the people around them. I've

(18:24):
heard from a lot of people who feel like they
need to have this official medical diagnosis in order to
prove to their family and friends that they have a
right to their grief. It's like they need the official
diagnosis as a way to legitimize their feelings and their experience.

(18:45):
And that is important. If you feel like everybody around
you is telling you to get over it move on,
then having a legit medical diagnosis gives you some power.
You can always push back at the people around you
and say no, no, no, this isn't like normal grief.
It's an actual medical condition. That official diagnosis is like
your shield and your defense. So you basically have to

(19:09):
agree that you're doing grief wrong in order to legitimize
your experience. I mean, how screwed up is that everybody
that in order to have your very normal, very messy,
very difficult, very complex response emotional response to the death
or loss of somebody you care about, in order to

(19:32):
have that honored and acknowledged and supported, you have to
give yourself a disorder just to make the people around
you take it seriously. So this is what I mean, friends,
Addressing the issue of prolonged grief disorder is a whole
cauldron of interrelated problems that go far beyond grief itself.

(19:52):
It is a symptom of the machinery of capitalism and greed.
It involves access to care, so that means issues of
race and us and gender and immigration. It also brings
into place centuries and centuries of people being scared of
big emotions. Who there's a reason why we're going to
need a lot of shows to talk about this one.

(20:16):
I hope that what you've gained from this show today
so far is one, of course, a sense of my outrage,
because honestly, you know, outrage is sometimes useful to share
to start you having these conversations, but also like you're
going to hear a lot of conversation about it, and
I want you to be equipped with some basic knowledge
so that you can enter into some conversations or some
outrage Twitter threads with a little bit more than what

(20:40):
the headlines give you. We'll be right back with questions
to carry with you. You know they're going to be
related to prolong grief disorder. We'll be right back, friends.
Each week, I leave you with some questions to carry

(21:01):
with you until we meet again. It's part of this
whole awkward stuff gets easier with practice thing this week.
Maybe it's the outrage stuff gets easier with practice thing.
If you haven't yet, go check out the media coverage
of prolonged grief disorder. Read up on it, Read my

(21:21):
Twitter rant about it. We'll link it in the show notes.
Read discussions about it for and against the complex, middle,
messy part of people who somehow, like I just did
at the end of the show, come out somehow for
something I don't believe in. Rant about it, speak about it,
ask questions about it. No matter what, I bet that
you will have some thoughts and feelings about it. This

(21:43):
isn't just a siloed only applies to certain people issue.
It is a whole, big, messy human thing. So for
your homework, your questions to carry with you this week,
go check it out, friends, and then send me your questions,
either about prolonged grief disorder or anything else. This show
is nothing without your questions. It is literally a Q
and a show. You can ask me anything you'd like,

(22:05):
Bring me your clinical questions. You're I'm trying really hard
to be a good friend, but I'm getting mixed messages
from everywhere. Bring me your questions above the things that
scare you. How to handle that one thing that always
leaves you feeling with a deer in the headlights and
you really need a script for it. Let's talk it out.
Call us at three to three six three and leave

(22:26):
a voicemail. If you missed it, you can find the
number in the show notes or visit Megan divine dot
c O. If you'd rather send an email, you can
do that too. Write on the website Megan Divine dot
c O. We want to hear from you. I want
to hear from you. This show, this world needs your questions. Together,

(22:49):
we can make things better even when we can't make
them right. You know how most people are going to
scam through their podcast app looking for a new thing
to listen to, and the they're gonna see the show
description for hereafter and think I want to talk about
that stuff. Things are hard enough. This is where you
come in your reviews. Let people know it really isn't

(23:10):
all that bad. In here. We talk about heavy stuff,
but it's in the service of making things better for everyone.
So everyone needs to listen. Spread the word in your workplaces,
in your social world, on social media and click through
to leave a review, Subscribe to the show, download episodes,
send in your questions, want more Hereafter. Grief education doesn't

(23:32):
just belong to end of life issues. Life is full
of losses, from everyday disappointments to events that clearly divide
life into before and after. Learning how to talk about
all that without cliches or platitudes or simplistic think positive
posters is an important skill for everyone. Find trainings, workshops,
books and resources for every human trying to make their

(23:55):
way in the world after something goes horribly wrong at
Megan Divine dot c. O Hereafter with Mega Divine is
written and produced by me Megan Divine. Executive producer is
Amy Brown, who produced by Tonya Juhas and Elizabeth Fossio,
Edited by Houston Tilly, and studio support by Chris Uren.
Music provided by wave Crush.