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

Published Mar 28, 2022, 7:00 AM

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 (323) 643-3768 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 (323) 643-3768 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 with everyone you know. Together, we can make things better, even when they can’t be made right. 


To submit your questions by voicemail, call us at (323) 643-3768 or visit megandevine.co

For more information, including clinical training and consulting, visit us at www.Megandevine.co

For grief support & education, follow us at @refugeingrief on IG, FB, & TW

Check out Megan’s best-selling books - It’s Okay That You're Not Okay and How to Carry What Can’t Be Fixed  

Learn more about your ad-choices at https://www.iheartpodcastnetwork.com

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 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, 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, 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 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. 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, 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 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, 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 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, 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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, 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 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 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 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 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 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 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 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 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 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. 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 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 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 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 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 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 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 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 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. 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 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 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. 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. 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 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 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 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 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, 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 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, 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 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 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 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.