Am I grieving right? With Dr. Katherine Shear

In 2022, Prolonged Grief Disorder was added to the DSM-V. A new mental health disorder tied to grief ruffled a lot of feathers, including Nora’s. She talked about it on TTFA (including skepticism around this diagnosis) and you all shared your thoughts on this news as well.

This episode is a very cool follow up because we get to learn more about this disorder from one of the doctors who created the diagnosis. Nora interviews Dr. Katherine Shear from Columbia University’s Center for Prolonged Grief about the difference between grief and prolonged grief, the treatment plan she and her team developed, and how American culture is still *so* bad at grieving.

Transcripts may not appear in their final version and are subject to change.

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I’ve spent eight years of my life so far trying to understand grief and to advocate for the grieving.

It is not the career that I thought I would have, but it is the career that I have, and I am very grateful for it.

There is an alternate universe out there somewhere, and it’s a universe where I am completely unaware of the power of grief, of the way that it can absolutely decimate you and your world, and the ways in which it can alchemize and rebuild you and

your world. Grief is a transformative experience, and while, of course, we love to believe that the things that don’t kill us make us stronger, we know that sometimes the things that don’t kill us can wreck us financially, emotionally, spiritually.

If you dare to love someone or something, you are opening your heart to the guarantee of grief. Relationships end, careers fall apart, people have a 100% chance of dying.

Sooner or later, the things that we love will be lost, and as a result, so will we. I don’t mean that we’ll die, but sometimes grief feels like we will die from it. I mean that grief is disorienting and confusing and enraging and sad.

In the thick of it, I sometimes felt like I was behind a thick plate of glass, like there was an invisible barrier between me and the rest of the world. I looked normal, I didn’t feel normal, I felt nothing.

And then I felt everything, and then I felt too much, and then I was afraid I didn’t feel enough. For something that is a non-negotiable part of the human experience, we really struggle to understand it, in ourselves and in other people.

Every grieving person I know has a mental list, a mile long, of the stupid things people said or did when they were grieving.

Every grieving person I know has been sure that they were doing grief wrong, and there was something about the way they were handling or not handling their grief that was somehow incorrect.

People love to say that life has no instruction manual, but it actually has many, many instruction manuals. They’re everywhere. We have social norms and customs.

We have billions of self-help books and podcasts and whatever else you could use to help you figure it out, but it doesn’t matter because the phrase is really meant to convey that no matter what you think you know about life, there is always a huge

chasm between knowing and living, between knowing and doing. In 2022, the New York Times published an article called How Long Should It Take to Grieve? Psychology has come up with an answer.

It was about the diagnosis of prolonged grief disorder being added to the DSM-5, and it caused quite a reaction.

Critics, myself included, were concerned that it would pathologize the very normal experience of grief, that it would push pharmaceutical companies into producing grief drugs. We created an episode to discuss it.

It’s called, How Long Should Grief Last? If you want to find it on our Apple Plus or Patreon, it is with my friend and former TTFA guest, Dr. Britt.

And Britt pointed out that a diagnosis can be helpful for people who are seeking treatment and validation.

A diagnosis is proof for an insurance company or employer that you need the help you’re trying to get, and it’s helpful for clinicians to be able to bill against. Because that is the nightmare healthcare system we live in in America.

Prolonged grief disorder doesn’t apply to everyone. There is a diagnostic criteria that would mean it applies to something like 4% of grieving people.

And there’s a treatment plan specific to this diagnosis, a treatment plan that has worked wonders for people who have gone through it.

In today’s episode, we are speaking directly to one of the researchers who brought prolonged grief disorder to the world. Her name is Dr. Katherine Shear of Columbia University Center for Prolonged Grief.

I was honored to have this conversation with her, and I am excited to share it with all of you.

So I’m gonna start with the personal questions, which is, before you were a grief professional, before you were one of the leading forces in grief research, what was your first experience with grief?

Yeah, my first experience with grief actually was with my grandmother, who died when I was six, and my mother had a very intense reaction.

I don’t remember a lot about that, but that was my first experience with grief, and my mother started having panic attacks actually at that point. And then, you know, she’s a whole other story, but yeah.

She ended up as state representative in the state of Missouri for longer than anyone had been in that position forever.

So that she wasn’t an impaired person exactly, but she did start to have panic attacks, because she also had that kind of history, probably a trauma history as a very small child, which is how we would see it today.

Yeah. But at the time, they were just like, well, she’s a woman. She’s acting crazy.

Let’s lock her up. You know, let’s get her out of here.

That is true. That is exactly.

Yeah. Let’s get her out of here. She’s causing a bit of a fuss, and we don’t love it.

I’m so interested in that. Like, you’re six years old. You’re experiencing the loss of your grandma, but you’re also witnessing your mother’s grief experience.

What did that teach you about grief?

To try not to think about it and to try to get it out of my life, pretty much to be afraid of it.

What sort of path do you take personally and professionally that leads you from that first grief experience into grief as the focus of your career?

You know, that’s an amazing question because to me, how it felt to me, it was totally serendipitous.

But I think, you know, given what I’m saying right now, and also that I started my work in medicine as a compromise between wanting to be a scientist and wanting to be a historian.

And so I did internal medicine, so I did a whole residency in that before I decided, well, actually, I really kind of want to help people who are emotionally struggling because that’s really what spoke to me personally.

And so then I switched to psychiatry and there I learned psychodynamic psychotherapy, which was wonderful in many ways, but also very unscientific. I mean, very unrooted in any kind of evidence-based, and we’re talking about a fairly long time ago.

We didn’t have that much evidence-based anyway. But so I got interested in doing psychotherapy research, which is pretty unusual for a psychiatrist. Mostly it’s done by psychologists.

But I got interested in that and in anxiety because it was a brand new area, really is what I thought, and panic disorder was brand new in 1980. We were talking about 1980. That was the first time it was official.

There were lots of opportunities and also it was very interesting to me, I think for reasons that I just told you personally. I did that for quite a long time, anxiety disorder research.

Then I got to various different places in my academic career, and I got to the University of Pittsburgh, and there was a young postdoc fellow there who was interested in grief.

That was a big place for depression research, and so she was doing depression, rather grief research in the area of depression, and they were finding that grief and depression were not the same, which for a long time, even today, a lot of people

confuse grief and depression. What we started learning back then, this is now the mid-90s, is that it really wasn’t and we’ve just continued to confirm that over and over in a lot of different ways. So it’s a really important observation.

I mean, we were doing it together, but I was spending a lot of time trying to figure out what would be the best way to work with these people.

It took me two years of doing that before I was basically confident enough to sit in the room with someone who was grieving, because I really was afraid of grief still.

Oh, that’s so interesting. And did you have that same fear about sitting down in the room with somebody who had an anxiety disorder or depression?

No, I never had. Maybe with a psychotic person, early in my career as a psychiatrist, you know, that was scary. But nothing like, no, this was different.

Yeah.

What is it about grief that makes it so scary to even be around, to even be adjacent to? Because I’ve felt that same way. And I think everybody listening has felt that same way.

I think that’s why there’s always one person at the funeral who’s like just doing too much, you know, like talking too loud, making too many jokes, you know, just being, just like wearing their discomfort with the situation.

I felt that too, like even after experiencing profound grief, just that, that sort of like fear around it.

Like I don’t want to say the wrong thing, do the wrong thing or somehow make this worse in a way that I’m not as afraid of if somebody I love is just in a depression or having an anxiety attack or something like that.

Yes, I think yes. And I can think of, I mean, I’ve thought about that question and I think there are, and others have too. For example, do you know who John Bowlby is?

Do you know, does that name mean anything to you? So, you know, he sort of was the father of attachment theory. And he wrote a book called Loss.

But one of the things he said was that, that anyone who’s grieving feels like the only thing that can possibly help them is bringing the person back. And that when we’re with them, we feel that too.

And that combined with the intense emotionality, that’s really uncontrollable, too. It’s a very uncontrollable kind of emotionality.

And generally speaking, we react to anyone who’s being very emotional with a strong urge, strong desire, almost like a need to comfort them, to kind of make it go away.

And then so it’s the two things combined, you know, the helplessness combined with the strong need to be a help that kind of gets us either stymied and afraid and avoidant, or most of the time, it’s either that or what you said a minute ago, or over

So, as you’re studying, sort of, it sounds like this big Venn diagram of, you know, anxiety and depression and PTSD and grief, what are you starting to understand about what makes grief different?

I mean, one of the big things that makes it different is that what leads to its onset is the absence of something, as opposed to the presence of something, you know, PTSD, or, you know, almost anything else, it’s like something that happens that is

threatening. This is the absence. And really, even if someone dies of a known illness, and it’s a progressive illness, and even actually, I am right now, two weeks ago, my best friend of 52 years died after a prolonged illness.

And even in that kind of situation, it’s just a complete change to have that person gone.

I’m so sorry. 52 years, I’m going to cry, but that’s so long. That’s a person who…

It’s a lifetime, really.

It’s a whole lifetime.

It’s a whole lifetime. And I feel like people are less understanding of grief around friendship, too, around the loss of a friend. There’s not a word for that kind of loss, the way that there’s a word for losing your parents or losing your partner.

So when you’re experiencing grief as a person, like that little chiron under your face says, Kathy, like when you’re Kathy, does being Dr. Shear help you at all?

For sure. I think it does. It does because I can remind myself of what I would tell someone else if I was with them.

In this case, I actually took two days completely off of work. And just, you know, it’s going to make me cry. Yeah, but and people who know me thought that they would never see that ever.

And I mean, it was a huge thing for me to do. And I did it because I knew that, I mean, I listened to myself. I just knew that there was no way that I could go on with life as usual.

It just wasn’t going to happen. And it would feel so wrong. And it would be wrong for me in that situation.

Was two days enough?

Yes and no.

It was enough for me to be able to get back to doing most of the things that I do. But I didn’t do them in this with the same intensity that I usually do. I was taking more time, but I could at least return to the job.

I have an academic job.

Yeah, but you don’t have to give like a hundred and, you know, fifty percent because I am a rageful, but I’m rageful about the state of bereavement leave in the US and the fact that we have none really, you know, it doesn’t exist.

There’s a suggested, you know, forty eight hours. Nothing’s required of any employer. And I just find it so strange that when our lives have completely changed, like completely changed, you lose like a person who’s like a pillar of your life, right?

Like fifty two years is longer than ninety nine percent of marriages.

Like the world doesn’t stop, which I think is one of the hardest things about grief is that you can step outside of a funeral home and you’re just seeing everybody else carry on as though nothing has happened because to them nothing has.

And I wonder if you can talk at all about like our American attitudes towards grief because I think so much of our aversion to like the real experience of it.

Like everybody experiences grief but to grieve, to actually like go through the process of grieving, I think is a privilege that not everybody can afford.

I think it kind of goes beyond how we deal with grief itself in the moment to how we think about and deal with death and the expectation of death and the expectation of the response to death.

In my class, you know, I do teach a class at Columbia about just Foundations of Grief Therapy.

And one of the students in the class is Indian, she from India, and she said, she’s told us that she has learned, she’s learned about death since she was, before she went to school, that it’s built into, they talk about it all the time.

And in school, they have a course starting in kindergarten, literally starting in kindergarten. But you know, it was so beautiful, I mean, it was so amazing. And that’s also true in Mexico.

We have a really, really lovely Mexican au pair with us right now. I’m living with my grandchildren at the moment. She says, well, we know in Mexico, there’s the day of the dead and it’s very big deal.

But it kind of infuses itself, they talk about death and dying all the time there too. So it’s really a part of a natural part of their life. And we try to do the opposite.

We try to push it away. It doesn’t happen anymore, which is, I think, a good sign. But when I first started this work and I would go to like a party somewhere and someone would say, what do you do?

And I would say, well, I do research. What’s your research in grief? Oh, that’s very interesting.

And then they wouldn’t say anything for a while. And then they would say, I think I need another drink. They would disappear.

Yeah.

I was going to ask you about that actually, because I have found a similar thing. If I, there’s two reactions that you can have at a party. One, I’m not invited to a lot of parties, probably because I’m like, do you guys want to talk about dying?

So either people respond like that, right?

They’re like, Yeah, like a deer in headlights.

Anyone else want to talk about their career? Or they’re like, thank God, I’m going to get a drink, I’m going to sit down and I want to tell you every single thought I have and I’m going to cry. And there’s no in between for me.

Those are the two responses that I get from just opening that door, opening the door. But I think that is such a good point that you brought up too, which is like, it’s hard for a culture that does not accept death.

Death is an aberration instead of the, you know, the natural conclusion, the inevitable end for all of us. It’s hard for a culture like that to have, I guess, any kind of healthy relationship with grief if, you know, you never see death, like, right?

Like people die in hospitals instead of at home, and then they’re sort of pushed into the funeral industrial complex. I also have always said that I think grief needs a rebrand because people don’t like the way the word sounds.

I think it comes down to that too. Right, grief, it’s a gross word. It doesn’t have a good mouth feel to it.

It feels rough. I don’t know, but it feels, people don’t like it. And I think that it needs like a little bit of a rebrand.

It’s not just sadness. It’s not just crying. It is not just, what is it?

What is grief? What is it if it’s not depression and anxiety and PTSD?

Right, it’s the reaction to the loss of someone. And the loss of someone is really, you know, one of the things, you know, one of the sort of truisms is that everyone grieves in their own way, right?

But it’s not only everyone grieves in their own way, it’s also everyone grieves every loss they have in a different way and in a unique way. And that’s because it is the reaction to the absence of something.

So, so you, in order to understand what happens when you don’t have something you had, you have to understand a little bit more about what you had and what you have, you know, and that’s where attachment to me from my sort of, I don’t know, researchy

brain, it comes down to like, so what is it exactly? What is happening when two people connect? And we know a fair amount about that. You know, Bowlby talked about safe haven and secure base, which is that that’s something we can relate to.

We can, we feel it. We know it’s true that, you know, the person, people we’re close to, people we’re closest to are people we turn to when we’re stressed or threatened or unhappy in some way, and they support us.

And also, they’re also there for us when we go out and start, try new things, learn new things, do things in the world. We know they’re, they kind of have our back. And they also encourage us to do those things.

And they share, importantly share in our happiness at success, that kind of thing. So all of that is relatable to, but then there’s a whole lot of things that it turns out we’ve learned much more recently that take place in these relationships.

Some of it being sort of out of awareness, help with regulating emotions or, and physiology regulating ourselves. Just they really, they kind of stabilize and help us regulate ourselves.

And then there’s just a whole series of really interesting studies that show that the people we love influence the way we see the world, physically see the world.

They don’t have to be physically with us for this to happen, but just knowing that they’re around changes just a lot of the ways that we think about the world and see the world and expect things to be in. And then we also expect to be with them.

We have all things like that. So, it’s just very, very complex what it is exactly that we lose, and we’re going to react to all of that.

But not only that, so that’s the loss of the person themselves, but that person isn’t only in relationship to us, they’re also in relation to, most likely to everyone else that we’re closely related to, like your children with either of those losses,

your, you know, and even your friends. And then they also have other people in their lives that you may not be as close to. You get where I’m going with this.

So, there’s a whole social sort of aura around the primary loss that people sometimes call secondary losses or associated stresses. But it’s, you know, so it’s this huge impact on, on us and then ripple effects all around us.

And we have to deal with all of it and we can’t. I mean, it’s just completely impossible to deal with it. And so we’re like overwhelmed in the beginning, you know, very overwhelmed.

The closer they are and the more important that person is in your life. And to some degree, the way they die, but that affects it, too. I mean, the way the person dies, who you are as a person, there are lots of things that come into play here.

But the point is that it’s pretty overwhelming in the beginning. And then, you know, as you kind of go through what Bowlby called bouts and moratoria.

And more recently, researchers Maggie Strobe and Henk Schuyt in the Netherlands kind of reframed this as loss and restoration.

But however you look at it, we have to kind of oscillate between confronting the pain and, you know, and sort of processing the whole reality.

I mean, really coming to accept it even it’s not, it’s not possible really to, to understand that someone is gone and not coming back until you’ve lived it for a while, even though your mind is telling you.

Yeah. And I remember being so resistant to, you know, just like the idea of acceptance and being like, you know, I was an obstinate early griever too. And I remember somebody suggesting that I might be experiencing grief while Aaron was alive.

And I was like, don’t you ever say that again? You know, like don’t, no, no, I’m actually not cause he’s alive and everything’s fine as long as he’s alive. So I need you to stop talking and never say that to me again.

How dare you when of course I was, right? And I was experiencing a whole lot of other things that I could have used a lot of help with and just was not ready to accept, was not ready to just truly let myself experience.

And to me, acceptance sounded so silly as if the opposite of acceptance was not believing it had happened. I remember saying something flipping like, no, I was there. Like, I know, like I know he’s dead.

But like, from, and please tell me if I’m misunderstanding this, the acceptance of it is like integrating that into your life.

For one thing, two things again, one is that lots of people feel like you, that they will not accept, they say they will not accept, they hate the word acceptance. They told me to stop using the word acceptance, you know, early on.

So I did for a while, but then I realized it was a reasonable word to use. And so I looked it up in the dictionary because I was, I decided, my favorite thing to do, yeah. 13 definitions, there are 13 different definitions of acceptance.

And when you think about it, you know, there are a lot of different ways we use that word.

And then I think what happens is when someone uses it, it’s, we might know the context and we might know what they mean by it, but also all those other definitions kind of like insinuate their way into your brain because your brain just hears that

word. So I think part of it is that we don’t mean like it’s accepted, it’s fine or you’re accepted into the group or whatever. I mean, it’s none of those kinds of things. It is what you said.

I mean, that’s what I mean by acceptance, which is come back into the way we say it now is to accept the reality that this person is actually gone and not coming back. That’s what we’re talking about.

I’m Nora McInerny, and you just heard an excerpt from our latest podcast episode. You can get the full episode, our entire back catalogue, and two new episodes a month through Apple Plus or on our Patreon, which is linked in the show description.

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