Resilient grief, complicated grief, anticipatory grief, disenfranchised grief. These are terms you may or may not be familiar with, but trust me, learning about them will help you and help you understand your friends and family in times of loss and grief. – Which, by the way, is pretty much going on all the time, hand-in-hand with joy and expansion. This human life is filled with grief. Let’s learn from an expert, steeped in her own experience plus backed by research, author of Always a Sibling: The Forgotten Mourner’s Guide to Grief , ⁠Annie Sklaver Orenstein⁠.

Transcript:

Diane Hullet: Hi and welcome. You’re listening to the best life, best death podcast, and I’m your host, Diane Hullett. Today I’m talking with Annie Slaver Orenstein, who’s written a fantastic book called Always a Sibling, The Forgotten Mourner’s Guide to Grief. Hello. Thank you so much for 

Annie Sklaver Orenstein: having me. 

Diane Hullet: Annie and I spoke last week and there’s just this big section in her book that I so wanted to separate out and come back to.

So, you know, your book is primarily about siblings who’ve lost a sibling. And it’s An incredible guide for people. And we were just saying at the end of last week, whether you lost someone years ago, lost someone recently, or you anticipate losing someone, this, this read will really help you understand the unique Aspects of sibling loss that are just different than others.

So in the book, early in the book, Annie, you, you, well, first of all, the book is both your story and a collection of hundreds of people’s voices and how they experienced grief. And then it’s also really a manual with some of the top people today in terms of what we know about grief. And I personally think we’re in a grief, illiterate society.

I think we don’t know that much about grief. I think we don’t know how to handle it when it happens to us when we’ve had a loss. And we certainly don’t know how to handle it when it happens to friends or family. We just kind of go blank. We don’t know what to say. We kind of avoid them as though that will be helpful.

Yes. Yes. Yes. Yes. So you’ve got this list of 16 different forms of grief, they’re called. And you know, this is probably an ever changing list and ever evolving, but let’s talk about this. Let’s talk about some of the different ways that grief can show up. And that’s a very long introduction by me. Get a word in edgewise.

Go Annie. 

Annie Sklaver Orenstein: Yes, I think. So one of the things that was really interesting for me is I was learning about it was, you know, these, these different forms of grief, and that, you know, You can experience more than one at the same time. And they are, you know, they’re non exclusive. They can change as you’re processing the grief, as you’re moving through it.

And so it’s just this, like, infinite Factorials started coming back to me as I was learning this. I was, like, having flashbacks to math. But it really just means like there are so many ways to grieve and there are so many ways to grieve for one person over the course of, you know, a few years or whatever it is.

And, um, you know, I think in a, in a lot of ways that made me feel comforted. Um, it made me feel validated. Because there were certainly things that I was experiencing that other people weren’t experiencing. You know, I was 25 when my brother died. My friends hadn’t gone through things like this and which was great.

I mean, it’s a good thing, but, um, it meant that I didn’t really know what to expect. And my surviving brother and I Grief differently in a lot of ways, and obviously my parents, you know, were grieving differently. And so there were a lot of things where I didn’t know, is this normal? Am I supposed to be feeling this?

Is this different? And there were a lot of pieces of, uh, grief that surprised me. And so once I started learning about these different types of grief and different ways to experience grief, it did make me feel validated, where I felt like, Okay, even if I don’t know anyone specifically who has grieved this way, it is common enough that it has a name and, and that alone was really powerful to me, you know, knowing that, that I wasn’t alone and that it was common enough that someone, some researcher, you know, some expert had put a name to it.

Just, I found that really powerful for myself. And so as with a lot of things in the book, if there was something that really. Made a difference for me in my own grief. It was information that I needed to include in the book. 

Diane Hullet: Oh, I think of it like a map. Like, I do think it’s this thing of, you know, we don’t want to have these words be such a box that we’re, they’re limiting, but we want it to be a map so you can see yourself on the map and you can see, oh, there’s, there’s a Different countries to this map and I’m moving across this landscape because I think of grief is almost like an energetic landscape and it is different than anything else you’ve fallen into in your life.

Annie Sklaver Orenstein: I like to have, I like the way you say it because you don’t around kind of energy. I’m laughing because the analogy that came to my mind when I learned about this stuff and what I included in the book was that grief was like cheese. The way you said it is a lot more elegant, but it was like, you know, I was learning where I was like, Oh, it’s like cheese.

Like. Cheese is cheese, sure, but there’s blue cheese, and then there’s cheddar cheese, and there’s mozzarella, and just because you like mozzarella doesn’t mean you’re gonna like blue cheese. Like, they’re wildly different things. And that, you know, that was where, that was where my brain went. I wish it had gone to, you know, more energetic field, but the man, 

Diane Hullet: no, I actually thought the cheese hilarious.

You say grief is a broad term like cancer or cheese. It defines the general vicinity of your emotions, but it isn’t nearly specific enough to truly understand it. I actually, I thought it was hilarious again. Your book isn’t funny. I don’t need to characterize it as funny. It’s just very personal. And the way It has a great moment.

The ways in which you insert your voice with these funny little bits, uh, really created this connection for me as a reader. And that was one of them. I just cracked up, like, cheese. Oh, yeah, because there’s a lot of different cheese. There’s cheese and then there’s cheese, as you say. So, so you list literally 16 types of grief.

And where do you want to start? I don’t know. Oh, 

Annie Sklaver Orenstein: my gosh. Ah, totally up to you. I think for me, complicated grief was one that I struggled with a lot. You know, some of these I experienced myself, others I didn’t. Um, but definitely resilient grief was one I was fascinated by because it’s like what I try to achieve, but typically don’t.

Um, and complicated grief was one that I Where I was really stuck for a long time and and which is very common with siblings 

Diane Hullet: Let’s kind of start with those three and just talk about how they differ from each other So normal or resilient grief and then anticipatory grief Which we kind of touched on before and then complicated grief.

So how are those similar? How are they different? 

Annie Sklaver Orenstein: Yeah, the resilient grief. I like calling it normal grief because all of these forms of grief are normal, but it is how some people refer to it. Um, but it’s resilient grief. People are able to move through it. They’re still grieving. They’re grieving just as much as anyone else, but their grief has a forward momentum to it.

You know, they, they, over time can start to feel themselves, feel things getting a little better, a little easier. Right. And it’s one of those things. And, and I go, I will not get on my soapbox and go on this tangent, but I feel very strongly that words matter. And you know, it’s in things like resilient grief and a lot of these, the grief can get easier.

It doesn’t mean it gets easy. It might never get easy. It probably will never get easy, but it can get easier. And the people who are experiencing resilient grief can often feel that. They can feel things starting to get easier, and they’re okay with that. You know, they can accept that. And I think sometimes you feel things starting to get easier, and it’s like a one step forward, two steps back situation, because suddenly things start to feel easier, and so it, it, Evokes this guilt where you’re like, wait, why is this getting, this shouldn’t feel easy.

You know, what’s wrong with me. I’m a terrible sister. If things are getting easier, right. But with resilient grief, they can grow from it. They can move forward. They can kind of take that grief with them. And choose how they want to, how they want to move through the world with that grief. Um, and it was something that I found really admirable and really impressive.

The people I spoke to who were like, I knew that I, I wanted to retain my joy. I knew that I wanted to, you know, move through this in a positive way. And they were actually able to do that. I, I was really in awe of that. 

Diane Hullet: And you, I, I felt reading your story, which may be inaccurate, but you had places like that as well.

Like you hit a place where you said, Oh, I’m, I’m going to get married. Like, I’m ready to get married, but my brother won’t be there. Oh my. So two steps forward. I’m getting married. One step back, it’s going to be a tiny wedding because I can’t two steps forward. It’s happening one step back I’m not gonna have a wedding party two step forward you do it one step back You know you you cry about his absence at that really important event So as you said, I think the two step forward one step back and sometimes three steps back and one step forward is Really part of probably all grief, but then this resilient.

Yes, please 

Annie Sklaver Orenstein: Absolutely, and then there’s There’s complicated grief, um, which recently has been kind of renamed Prolonged Grief Disorder. Um, and it’s where you kind of get stuck. Um, that forward momentum that is evident in resilient grief is, is lacking, is missing in complicated grief. It is like a difficulty accepting the loss and a preoccupation with it, and there can also be intrusive thoughts, um, psychological distress, you know, more, um, people can become much more kind of preoccupied and fixated on the death.

And I think that’s an interesting thing is that when I, when I spoke to people who experienced resilient grief, a lot of resilient grief, a lot of their focus was on the person and their life. And with complicated grief, there’s a lot of, um, fixation around the death and, um, there can be, you know, some PTSD in there as well.

Um, a lot of anxiety, but it’s, it’s kind of getting stuck in it in a way where years out from the loss. It might still feel very much like it did in the immediate aftermath and you can kind of look at other people around you who are moving through it and think, how, you know, how are they moving through it?

And why am I stuck where I’m stuck? You know, and sometimes people are people really hold on to it. You know, I know I did. I felt like if I wasn’t grieving if it, if it got easier than I was somehow doing a disservice. And so that’s part of it is you kind of cling to it. You cling to that grief because sometimes it can feel like the only thing you have left.

Diane Hullet: That’s huge. Say a little about anticipatory grief. That’s like death is imminent. You know, it’s coming. I think sometimes even it is an imminent imminent. This is on such a different scale, but I have a very beloved old dog and you know, I’ve had some anticipatory grief with her for like a year because I didn’t think she was going to last through last summer.

And then she lasted through this summer, but. You know, so I don’t know that her death is imminent, but I’m anticipating that death. 

Annie Sklaver Orenstein: Yeah. And I think that, you know, anticipatory grief was something, um, that I heard about a lot with people who, where, where their, um, sibling suffered from an extended illness.

You know, or, or terminal illness where they knew that this was coming. Um, but also it came up a lot in people whose siblings struggled with addiction or mental health issues where, you know, I, I talked to one younger sister who said every time she saw her brother, she would hug him for like a little too long because she always felt like there was a chance that it was going to be the last time she hugged him.

Um, and so that kind of always wondering, is this going to be the last time I see them? And there is some, there is a lot of grieving that can happen in advance. Um, and so there were a lot of people who felt like they grieved less than they expected after the death. Because they realized that they had grieved so much in advance of it.

Um, and so it’s that feeling of, you know, knowing that it’s knowing that it’s coming, knowing that it’s happening and being able to process some of that. There’s also anticipatory grief that happens ahead of. Anniversaries or big life events. You know, I can tell you the anniversary of Ben’s death is October 2nd.

It’s September 23rd right now. I’m like a mess 50 percent of the time, starting about a week ago, you know, and, um, I just have learned that that’s what happens to me in late September. And, um, you know, there have been amazing A few, but already a few days of just, you know, being in it and, and being really sad and being kind of constantly on the verge of tears.

And I know it’s because my body remembers, you know, and, and we hold a lot of this in our bodies and grief has a lot of somatic symptoms and. So when the season starts changing and the leaves start changing, like my body knows what’s happening. And so that is another form of anticipatory grief where we, we start to grieve ahead of these events because we know what’s coming.

Diane Hullet: Yeah, when I read that in the book and I realized we’d put this interview on this day, my heart really went out to you. I thought, well, here we are in the midst of late September.

And I 

Annie Sklaver Orenstein: never know how I’m going to be. Every day is kind of a crapshoot, but it, you know, it, at least I know now, you know, I think for the first few years I’d be like, but it’s not October 2nd. Why am I like this? You know? But again, now I’m like, oh, this has a name. This is a thing. This happens to people and it’s happening to me.

And you know, for me, it’s, The anniversary of his death and his birthday are only three weeks apart. So like October is just a nightmare, but it’s really, it’s the anniversary of the death that I have a harder time with, but there are a lot of people I spoke with where the birthday is harder or, you know, uh, a specific holiday is harder.

So. what that event is that prompts the anticipatory grief can also change. 

Diane Hullet: Yeah, that’s, I think that’s so well put. And again, understanding that there’s a map for this, understanding that there’s a, there’s a, uh, a guide for this, that this is not just abnormal or, uh, you know, off your rocker in some way, like there’s a reason that your body is feeling symptomatic and holding something and finding ways to get support, whatever that means for different people.

Let’s talk about, there’s a couple others that really grabbed me. One is secondary losses. I think this is really important and not everybody talks about that. 

Annie Sklaver Orenstein: Yeah. Secondary losses are, are all of the things that you then don’t experience as a result of the loss. You know, the, the other things that are lost as a result.

So, um, I call it the domino effect. You know, it’s things like, um, kind of what you mentioned with my wedding, right? As a result of Ben’s death, I knew that, you know, my, I wasn’t going to have my whole family at my wedding, right? That’s a lot. Um, my future children, who now exist, but my, my children, you know, lost the opportunity to have, to know their uncle Ben.

And that’s a loss that I have to grieve. And so it’s all of these, you know, I, you know, He never got to have children, which he always wanted, you know, and so all of those things become Secondary losses that we have to grieve and many of them we grieve As we age and as we hit these milestones ourselves, um, is that we feel their loss again in those moments and we have to grieve that, that missed opportunity and that secondary loss all over.

Diane Hullet: I think there’s also that, who am I now in the community? Who am I now in my identity? Like that can be a secondary loss too. We, we have to go on one small tangent about Ben, which, um, I just love this story. You said that for a while, one of your. Kids favorite songs was don’t stop believing by journey. And this was a time when you had kind of gotten into touch with sort of signs showing up from Ben, like especially certain songs playing at certain times.

So you got in the car one day and your son’s like, play, don’t stop believing in you and your husband are like, absolutely not. We’re so done with that song. We’re going to listen to the radio. You turn on the radio and what song comes on. Just thought that was great. And yes, right after I had kind of refreshed myself with your book yesterday and read that part again, I walked into a store and what song was playing?

No, not kidding. Not kidding. 

Annie Sklaver Orenstein: Oh my God. That is amazing. I think that I love that so much. 

Diane Hullet: I loved it too, because definitely, uh, music for you and music for Ben was such a huge, piece of connection and, and continues to be. And that’s a whole other wonderful part of the book that you go into are how people really continue their bonds with their siblings in these ways of kind of mysterious signs, if you will.

Okay. But that’s a whole other podcast. We digress. Um, let’s go back just for a second to, um, I guess I think it might be interesting to talk about disenfranchised grief, because that’s another term that gets bandied about and how would you describe that type of grief? 

Annie Sklaver Orenstein: Yeah, I mean, that’s a Greek that isn’t recognized and it’s, um, it could be kind of what we talked about, I think, in the last episode that that feeling of like when people ask, Oh, were you close?

And so if you weren’t close, your grief can often be disenfranchised. You know, it’s, it’s kind of people deciding like whether or not you’re allowed to grieve, um, and then deciding, no, you’re not allowed to grieve. Um, and it, it can also happen a lot based on the cause of death. You know, I mentioned, um, in the last episode, my brother was killed in Afghanistan and there was.

You know, all of the local public schools had let the kids out and kids were on the, you know, in front of the school with American flags while we drove by, like, it was crazy. And then I talked to people who, who lost siblings in, in much more taboo ways, like addiction or suicide, and no one talked about it.

You just didn’t talk about it at all. And so that loss. isn’t recognized, you know, because people don’t want to talk about it or, you know, they don’t want to kind of recognize it and give that weight to it. And so when as siblings, we are already disenfranchised and known as kind of like the disenfranchised mourners.

Um, then there are some things on top of that, like cause of death or relationship strength and type that can make that even worse and kind of compound it. 

Diane Hullet: Well, there’s so much more to say, but I’m, I’m just going to read a couple more of these and if they resonate with listeners, you know, you can Google this, you can look this up.

Um, there’s also chronic grief and delayed grief, distorted grief in which grief can kind of really go somatic and take on a very physical form, cumulative grief. This is huge. When bad things come in multiples, people get hit by multiple huge losses in a short amount of time. Exaggerated grief, massed grief.

Grief that doesn’t look like grief. And I think it’s important to remember that children’s grief often doesn’t look like adult grief. So knowing traumatic grief, you call it grief plus, plus a PTSD cocktail, elective grief, like New York city and the whole country coming together after nine 11 or new Orleans after hurricane Katrina and the way the country came behind that, and also didn’t in other ways, inhibited grief.

That’s the I’m fine version, abbreviated grief, and absent grief. So I think all of these are, are really powerful ways to better understand the landscape of grief that’s out there. And Annie, you as an author and a griever have just done such a phenomenal job of bringing so much together in this one little slim volume.

Um, I’m kind of joking. It’s not really a big meaty book. That’s so, so worth reading. Uh, you can find out more about Annie at her website and on Instagram, Annie’s flavor, Orenstein. Yes. And you can send her book wherever books are sold, local bookstore, your library, or the behemoth of Amazon. Thanks so much for your, um, gosh, your.

Open hearted exploration of what it’s meant to you to lose your brother, Ben, and to continue to say his name and say his story and how important that story is to you, to your family and to this broader community of grievers of siblings. I think there’s. So much gratitude when people can understand that they’re not alone.

We’re not meant to grieve in isolation. And that’s a big problem with grief these days. So reading a book, finding a group, realizing there are zoom groups for all kinds of grief and helping yourself get connected. 

Annie Sklaver Orenstein: Thank you so much for having me. It’s been a wonderful conversation. 

Diane Hullet: Thanks so much to you, Annie.

Appreciate your time. As always, you can find out about the work I do at Best Life. Best death.com. You’ve been listening to the Best Life Best Death podcast with Diane Hallett. Thanks, bye.