How Long Should Grief Last?
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In March, a New York Times article made the rounds titled, “How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer.” And if that sentence alone makes you roll your eyes and want to punch an inanimate object, you’ve come to the right place.
Nora read the article (twice) and had … some thoughts. So did her friend — and former TTFA guest — Brittany Freeman Jean-Louis.
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How long should it take to grieve?
That is the title of a New York Times article that came out in late March.
It’s an article that was sent to me many, many, many, many, many, many times by some of you, by friends, by family. It was also an article that was served up to me by the New York Times app itself. As well as you know me, this app also knows me.
And it looked at me through the camera in my phone, through that front-facing camera, where my double chin and my nostrils live, at that view, and it said, “You know what, Nora? This is how you should start your Sunday,” with this sort-of-innocuously-titled article that … ya know? It got me.
I saw it, I clicked, I said right away, “Yeah, this is. This is how I want to spend my Sunday.”
And I read the article twice: once with a vengeful heart and once with an open one.
Because I am not a credentialed grief expert. I am a reluctant expert in my own grief, like anyone else who has ever experienced loss. I am an expert in my own losses. And I wasn’t sure I wanted to talk about this article on the podcast, because sometimes when people call this a grief podcast, I think, “Is it? I don’t think it is. I mean, we talk about grief. We talk about all kinds of hard and difficult things. But is it a grief podcast specifically? I don’t know.”
But I do know that grief is central to the origins of this show. It is central to the person that I have become since I experienced grief in its rawest forms. And that is no offense to my grandfather, who died when I was in fifth grade. That is no offense to the uncle who died when I was in middle school. But I truly did not understand what I was feeling during those losses as a kid.
But — and this is a part of the origin story of this episode, and if you’ve been here a while, you already know it, and you can fast forward 15 seconds while I catch up any newcomers — in 2014, I lost my second pregnancy. It was 11 weeks, six days, to that point, almost out of that first trimester, where you think, “As long as I can get through that, it’s smooth sailing, baby.”
(I say that with a huge eye roll, because is it ever smooth sailing? No. Anything can happen at any time. We can’t live like that, though. We can’t live believing that. We have to believe that at some point we are crossing bridges into some kind of safety. And I was almost there.)
And then five days later, my father, who had been diagnosed with esophageal cancer that had spread to his … lymph nodes — I think? Honestly, we weren’t paying that much attention to my dad, medically. He was very private. He’d been diagnosed in May. He died October 8th. Five days after my miscarriage.
And then six weeks after my dad died, my husband Aaron died. And he had had brain cancer for, as far as we knew, three years. But when there’s a tumor about the size of a golf ball that gets extracted from your head after you have a seizure, you gotta think maybe it was in there for a little while longer. It was there. It was sort of biding its time. It was a little stowaway when we met and fell in love and thought we were, again, crossing that bridge into a safe adulthood, where we had found a partner and were going to share a home and share a life and get married and all of that.
And we did those things. We just didn’t have very long to do them.
So that experience, that sort of triple loss, that was the first time I understood that I was experiencing grief.
And I thought, in all of my wisdom, which was none, I thought I had the key. I thought I had the key to grief, which was this (pull up a chair, listen closely):
I was going to stay as busy as possible for that first year … because after a year, the grief would be over. It would expire, and I would have outrun it. I would have avoided it completely. I would have been a genius – an innovator, truly, in the grief space. I thought I had found a code, cracked it. I was a woman in STEM, finally.
And if you can believe it, all of the things that I did to keep myself busy …
things like: raising my child …
things like: bingeing “Real Housewives” while drinking a bottle of Skinny Girl Margarita, which is not the serving size, but it was for me (anything is a serving size if you try hard enough) …
things like: working – not at the job that I lost (which is, again a complicated topic, because I did not lose it, but I did leave after being sort of asked if I was going to come back when the obvious answer was, “No, I can barely form a thought”) …
things like: writing my first book in the six months after Aaron died.
things like: coming up with the idea for this podcast and tweeting out into the universe, “Who knows how to make a podcast?” and getting connected to Hans Buetow at APM and starting to work on it …
All of those things did not actually help me avoid grief. They kept me from processing it. They kept me from healing, in a lot of ways.
And around the year mark, which is also when I met my current husband, I had a full-on breakdown. Full-on.
The one-year mark was not the end of anything for me. It was the beginning. It was the beginning. And it was really, really, really hard. I wrote about that in my second book, No Happy Endings, because everybody sort of thought that I was better … because I had met somebody and because enough time had passed.
And I was so not better.
I’ve spent so much time in the past 7+ years with people who have experienced profound loss, and that’s only been amplified by the past few years and being surrounded in the news and in all of our interactions by people who are experiencing the loss of their normal lives, or their safety, or their loved ones. There’s just so much suffering in the world. And in my conversations, in my experiences, everybody thinks that the way they are feeling after the death of somebody, after a huge, life-changing loss of any kind, is wrong. They are wrong for being in this kind of pain and they shouldn’t feel this way anymore.
And so back to that article in the New York Times. I read that article at first feeling incredibly defensive. At first feeling incredibly defensive for myself, for the people I know, for the people I don’t know, who already think that something is wrong with them for their normal human experience.
And I felt defensive, because the subhead to this article is: “How long did it take to grieve? Psychiatry has come up with an answer.”
And in the article, they talk about the Diagnostic and Statistical Manual of Mental Disorders, which is hard to say, and it’s also known as the DSM. This is the literal handbook used by health care professionals here in the U.S. when diagnosing mental disorders. It’s known as psychiatry’s Bible. And the latest edition of the DSM is the DSM-5, and it includes a controversial new diagnosis, which is: prolonged grief disorder.
And the article describes prolonged grief disorder, saying essentially that it’s people who are not feeling better after a year. A year!
Ugh.
A YEAR? REALLY?
In the beginning parts of grief, I’d operated under the assumption that a year was the expiration date. That I really ought to be feeling better after a year. But it took me months — seven, eight months — to even go see a mental health professional after Aaron died. I did not see anybody while he was sick, by the way, when obviously I was also grieving his health, the loss of our normal life, our future, anticipating in many ways the life that I would have to live without him eventually.
I have written, in the past, op-eds for The New York Times. I wrote I think most recently about the fact that we are not a culture that allows people to grieve, that grieving itself is a privilege. And it’s one that I had, that I had as a middle class white lady, and also that a lot of people don’t. We have in this country maybe three to five business days of paid bereavement leave when you lose a spouse, a sibling, a child, a parent, if, if, if, if, you have a full time job with benefits.
Three to five business days is not even really enough time to plan a funeral.
So that’s why I wanted to talk about this article on my podcast. Because there’s just so much to it.
I sent the article to my friend Brittany Freeman Jean-Louis, who you might remember from two episodes with us – “Untangling Knots” and “What’s Going to Happen to Me?” It was a two-parter where we talked about her losses: the loss of her mother, the loss of her father, the loss of her husband.
Brittany is not just a griever. She is also a mental health professional. She’s got her own grief trifecta going on. And she has a mental health practice.
I sent it to her, and immediately she replied and said, “I’m going to need a minute with this.” We’re texting back and forth after she’s had time to read it, and I said, “Would you come on TTFA and talk with me about this?” And she said yes.
So on a rainy day in Phoenix, Arizona, which is very rare but felt appropriate, I called up Brittany, and we talked about grief as a diagnosis. We talked about prolonged grief disorder. It is in no means an extensive conversation, but I do hope it is the beginning of one within this community and out in the world. So if you would like to contribute to it, if you have some thoughts on this episode, on that article, please call us, let us know: 612-568-4441.
Here we go.
Nora McInerny: I had to call you. Well, first of all, I had to text you. I had to send you a text storm. Then I had to give you time to process. [laughs] And then I had to ask you to come discuss with me this New York Times article — not only as a griever, as a person who has experienced a lot of loss, I would say that the triple crown of loss, right? Mom, dad, husband.
Brittany Freeman Jean-Louis: Yes. Grief trifecta. That’s what I call it. The Trifecta: 2017, 2018, 2019. Just all in a row. And it’s just 2022.
Nora McInerny: And it’s only 2022.
Brittany Freeman Jean-Louis: And it’s just 2022.
Nora McInerny: And so I wanted to first ask: Is your grief over?
Brittany Freeman Jean-Louis: Absolutely not. I don’t believe at all that grief can be over. I do believe that grief is an extension of the love that we have for the people that we have lost. And so as long as you’re going to love them, that’s as long as you’re going to grieve them.
Nora McInerny: A lot of people sent me this article, and I read it with an open mind. I really did. I was like, “OK, yeah, let’s see what’s going on. You know? Oh, maybe there’s something …” But I will tell you that when I read that prolonged grief was the year mark, I almost crushed my iPhone in my bare hand.
Brittany Freeman Jean-Louis: Yeah. Yeah. It’s so bizarre because of course, I’m reading this through two different lenses, right? I’m reading this through the lens of a CEO of a mental health clinic, as a therapist, and I’m also reading it through this lens of this grief trifecta and losing three people, having these multiple losses back to back, from 2017 through 2019. And I have to say that I can see both sides, and yet I’m still leaning towards, “This is absolutely ridiculous.” You cannot be over grief in one year, and you can’t be judged if you are grieving over a year’s time. There’s just no possible way that you cannot continue with your grief.
Nora McInerny: When you say from both sides, and seeing both sides, I want to talk more about that because I did assume that a year was the — a year is the social expiration date. I will tell you that much. People are like, “Well it’s been a year. Let’s [clicks tongue] you know, keep it moving.” But I had done my best to sort of keep myself busy, avoid feeling anything too deeply. And, you know, I just had, like, a full-on breakdown at the year mark, a full-on breakdown. And I would say years two and three were even worse. And I did feel a certain sense of maybe shame that I wasn’t fully better, and I didn’t even really know how to talk about it with a therapist. I was eventually diagnosed with PTSD from having watched these violent events that I had to process. I did EMDR. These things helped. However, the other side of me feels so fiercely defensive of people who are just still feeling that loss. I still feel that loss now, and it’s been seven years! And I just feel very, very defensive of what is a natural human reaction to loss, to losing the people that we love. But I want to hear you, not as my friend and fellow widow with dead parents, but how you feel about this as a professional.
Brittany Freeman Jean-Louis: Sure. So, as a CEO of a mental health clinic, I think that it is very important for the DSM to be expanded, because we need to continue to keep treatment individualized. And so when we are able to expand, it’s two-fold. We’re able to continue to keep treatment individualized, but we’re also able to be paid for the work that we’re doing. And unfortunately, commercial insurance companies don’t truly pay therapies what they’re worth, right? And so we can expand diagnosis, we can continue to ensure that folks are getting the proper treatment when they come in. And we’re also ensuring that we can actually get paid for more things that we are seeing in the therapy session.
Nora McInerny: To me, there is a difference between, like, just feeling numb and feeling, like … isn’t that not just grief, but some of, like, the byproducts of grief? Like, I mentioned PTSD. You are in shock for a while. It takes a while for you to even, like, feel what might be grief.
Brittany Freeman Jean-Louis: Absolutely. And I do believe that that is something that the DSM does touch on. So there really is no grief disorder in the current DSM. So we’re in the DSM-5. And so this particular article mentioned that in the next one coming up, that that prolonged grief disorder would be in the DSM. However, I like the fact that, you know, there are certain disorders that they said, “OK, let’s rule out grief for diagnosing someone that let’s say has an adjustment disorder,” which is basically a stress disorder that comes from an acute stressor that you’ve experienced. You’re still going to be grieving within, you know, three months or even six months, right? But then somehow, I don’t know how we got to 12 months. I don’t know who decided that that was the marker for you being done, you know, with … with grief. Because there are, like you said, so many byproducts of it. And you know, there’s the primary loss of losing a person, and then there’s also the secondary losses of losing someone, right? So you’re losing the function of the person that was in your life. And I’m speaking from my experience. I lost a team player, you know? I lost someone that played a very significant role in my life. And I had to adjust from being a two-person household to now going down to a one-person household, which means that everything is now on me. So I have to, you know, go to the grocery store. I have to put oil in my car. I have to, you know, make sure that all the bills are paid, and I have to make sure they’re paid on time. I have to rearrange all of the systems that I’ve created with this other person, and now I have to recreate this trajectory of my new life without this person. So of course, there’s going to be secondary things that pop up, because my life has literally changed in the matter of a day, that day that my person passed away.
Nora McInerny: And you’re also losing this person who had this shared history with you. Who also held these parts of you too, you know? Who had filed away inside of him, you know, these different versions of Britt that had existed, too. And it is a lot. And it takes a while even for you to realize what all of those things are, because they’re not all revealed to you in a year.
Brittany Freeman Jean-Louis: Absolutely. And even with you saying that, you know, it just reminds me of the journey, you know? Like, when you get married, the vows that you take to continue to be with each other and to walk out life and walk through life with each other, you’re losing the witness to your life. You know? The things that you’re doing on a regular basis, the support that you need, the level of support that you need to do what you need to do on a regular basis, that person is gone now. Right?
Nora McInerny [00:27:17] And do you have access? Who gets to see what the verbiage of what’s going in? Because, you know, the details are not in this New York Times piece.
Brittany Freeman Jean-Louis: Yeah. So I wondered that also, myself. Specifically, I wonder the cultural piece, because I don’t believe that the symptoms that are listed in the DSM are for people that are from the BIPOC community. Our symptoms look very different than what’s listed, based on our cultural experience in this country, right? And that’s like a whole different podcast for a whole different day. But I know that there are committees of people that are hired that look at certain things. I wanted to kind of give a little bit of education of what that looks like, just so that people can get a sense of what perhaps this prolonged grief disorder will look like — just so that, you know, people get a sense of what the criteria is. So, in regards to this persistent complex bereavement, of course, it’s experiencing the death of a close loved one. “The following symptoms are basically experienced on more days than not, which has persisted for 12 months.” And so when I think of more days than not, I’m like, “So again, who determines how many days that you have these particular symptoms?” So listen to these symptoms, right. So there’s: a yearning or longing for the deceased, intense sorrow or emotional pain, preoccupation with the deceased, and preoccupation with the circumstances surrounding the death of the person. So that’s basically saying you’ve experienced one of those symptoms, on more days than not, persisting for 12 months. And I’m just like … these are definitely things that persist after a year! I’m still yearning and longing for the people that have passed away. There’s still intense sorrow and emotional pain. There’s still thoughts about my person that passed away, or my people that have passed away. There’s still a preoccupation surrounding the death of the person, the circumstances, right? And so there’s other criteria that they put in there as well. “At least six of the following symptoms are experienced on more days than not, and have persisted for over 12 months.” So there’s these two criteria. There’s distress to death and then the social identity disruption. So, distress to death is: It’s hard to accept the death. There’s this disbelief or emotional numbness over the loss. There’s bitterness or anger related to the loss. There could be self-blame, excessive avoidance of reminders of the loss. And that last one hits me because to this day, now remember, I’m in year three. My husband collapsed in a Best Buy, right? And he died in a Best Buy. I cannot, to this day, I cannot step foot in a Best Buy. And so I think that that’s a normal response for anyone that has lost someone close to them, that has experienced this close type of loss. It’s going to be hard to go back to certain places. They’re going to be triggers for you that can last for way longer than a year.
We’ll be right back.
Nora McInerny: A point of this article that was a red flag for me is, “Oh, let’s kick off some drugs to help treat this.”
Brittany Freeman Jean-Louis: Absolutely. That was a red flag to me, because I think that something that was at the very beginning of the article. And I’m just like, you know, is this the push? Like, is this the real push, that we’re looking for medication immediately to medicate people if they, at this year mark, continue to have, you know, these grief symptoms? Let’s just kind of throw medication at them, because they’re still grieving. And there’s nothing wrong, of course, with medication. They’re folks that need medication to help regulate their emotions. They’re folks that need medication to get through their daily lives. Yet at the same time, the article just seemed to kind of push that as like … that’s the first thing that we’re looking to do.
Nora McInerny: And also, I say this as a person who did not get any sort of medication after or while Aaron was sick. And, I mean, the grief that I had started before he died, you know? It was the year before he died, watching him deteriorate, and having, you know, really no mental health support around that. I remember people saying, like, “Maybe you should see a therapist.” I was like, “When? When would I do that? When would I do that?” And you know what would have really helped me? Aaron had Ativan. Me having Ativan could have helped, right? Like, maybe I could have slept at night. Maybe that would have been helpful for me.
Nora McInerny: There’s this part of the article that says, and I think you touched on this too, you know, having this in the DSM will also allow professionals to, like, get paid, which is a good thing. I’m not saying that is a negative thing. I’m not saying, “Oooooh, let’s look through this book and see what I can get paid for.” But you know, we are all, everybody, beholden to this bizarre system. Health insurance, I do not understand it. If you are a person who works in health insurance who thinks it makes sense, please give me a call, because I got a lot of questions. Because I can imagine how difficult it could be if you’re a mental health care provider. Someone walks in the door. They are obviously having trouble processing this grief, moving forward with it, and not getting stuck. And the thing is also, you and I both know, we’ve seen people who are literally stuck. People who I could, as not a professional, who has not seen the next episode of the DSM … issue! The next episode. [laughs] “That’s in the DSM season six.” I can look and say, “Oop, yep, this person. Yeah, they are, they are stuck in it. Like, it has been X amount of years and they are at the exact same place they were that first day.” And that is frightening, right? That is something that needs help and maybe would benefit from it being named. But at a year?! I really struggle with that. I really do.
Brittany Freeman Jean-Louis: And that’s where, even though I’m able to look at this through two lenses, I still kind of go back to, “Yeah, a year is just not it. That’s just not the timeframe we should look at.” And when we’re talking about diagnosis, right? A diagnosis should be something that’s empowering and not invalidating. So and when I say empowering, it should inform and normalize, right? So it should inform you, “These are your symptoms. This is what you’re going through, right?” Which is very validating. When someone can name and list the things that you’re going through and normalize it and say, “This is a normal thing,” that’s validating, right? While invalidation can cause hurt and confusion, which causes an unhealthy view of that person. Right? And then that’s where stigmas are birthed. So ultimately, if you’re putting someone in a situation where you’re saying, “Hey, you have this disorder,” and the diagnosis and the symptoms under this diagnosis may seem validating to you, and yet at the same time, once we get to that year mark, once we say like, “OK, but if you’ve experienced any of these things over a year …” that’s where the invalidating piece comes in for me. And that’s where I disagree, as a therapist and as a multi-loss-griever.
Nora McInerny: Every year, right? Every fall, I have the same reaction. And it starts in October, when I had my miscarriage and then my dad died, and then it is sort of ramping up and ramping to Aaron dying. And I just am like, at my worst. I’ve done it before. I did it when Taylor Swift released the song “Cardigan.” I just laid in bed and I just cried. I just cried and cried and cried and cried. And I put this episode of the podcast out that was basically me, like, talking into my phone, crying, weeping into my phone one November night, when I was traveling, and it all just hit me and I just like, cried it out. And I got a message — and I know this came from a person who really, really, really meant well and who might hear this, which is why it may or may not make it into the episode — but I got this message that was like, “Hey, I heard your episode, and you know, I can help you, like, take that pain away.” And I just thought, like, okay … this sort of yearly, you know, rip my guts out kind of pain, I don’t want it to go away, if that makes sense. I don’t want to ever be a person who’s like, “Well, yeah, you know, my husband died and he was 35, the father of my child. But you know what? That was a long time ago.” I think it makes perfect sense to let yourself be anguished by, you know, human suffering, by, you know, your own suffering. I think that’s OK. I could be wrong. I have no professional training. But getting that message, I was like, “Oh my God, you heard that and thought, like, ‘Oh, this is a problem.’” This is like a yearly ritual for me! And not to say that doesn’t happen at other times, Britt, because yesterday Ralph did this thing … it was watching Aaron, like, emerge from him. He did this funny little smile, waved his hand, like, waved me off in this way that Aaron used to do, like, humorously. And I just thought, like, what?! Like, where did that come from?
Brittany Freeman Jean-Louis: Where did it come from? And then it’s like, “What am I supposed to do with the emotions that come up when that happens?”
Nora McInerny: Yes, yes, yes.
Brittany Freeman Jean-Louis: I think you’re spot on with it. First of all, just to kind of go back to something that you said: I don’t think that our culture really educates about grief. I think we’re just starting to have the conversation. Just like, you know, we just started to have conversations about mental health, right? And you know, this whole thing where it’s OK to not be OK. Right? The discussions about, you know, suicide, right? Those things are becoming something that we’re talking more about. We’re normalizing. And I think grief is one of those things that we do not talk a lot about. And grief is one of those things that we need more education, we need to talk more about death. And I know that that sounds a little ridiculous, because in our culture, we want to be happy. We want to be satisfied. We want to have this, you know, “Let’s do whatever we want, let’s live life to the fullest.” And it’s like, OK, yeah, but we need to stop and talk about death too. We need to talk to our kids about death, right? And not make it scary, but talk to them so that they understand that this is a natural part of life, so that we can gather more information that can be used when we’re talking about diagnosing someone, right? And when we’re talking about validating someone that has experienced grief, because think about it: People still don’t know what to say. People still don’t know what to do when someone dies. Someone that they know is close to them, someone passed away, people … we still don’t know what to say. We still don’t know what to do. And I think that that’s unacceptable. I really do. And I think it’s really something that we have to talk way more about. Because grief is so multifaceted, and it’s so misunderstood at the same time. And it’s multifaceted in the sense that it’s not just sadness, right? And I think that’s where the diagnosis piece trips me up a little bit, too, because even in sadness, there’s clarity. There’s education. How much have you learned about yourself? How much have you grown since you’ve experienced the loss of a loved one? How many times have you experienced joy, you know, in the midst of your grief, right? And I don’t even want to separate joy from grief, because joy is a part of grief. And so we have to define grief better so that it’s not just this one thing, which is sadness only. And that’s what we’re kind of surrounding this diagnosis around, just this one piece, which is that sadness, right? But we need to talk more about there are multiple emotions that are related to grief that we have to recognize, and we have to include that in the holistic experience of having a grief process.
Nora McInerny: Having a grief process. Exactly. And some cultures within American culture do have them. And you are so, so lucky if your culture embraces and helps you process grief. And also you’d be considered lucky if you have a job that lets you do that. I wrote an op-ed for the New York Times a million years ago, it feels like, but we can’t talk about grief without talking about the privilege it takes to grieve, to be able to grieve. And most people, most Americans, have maybe two to five business days of paid bereavement leave. And after that, you are on your own. And that is if and only if you have a full-time job that offers you benefits. And our mutual friend, Moe, she was cutting hair like a week, maybe two weeks after her husband died by suicide, because you don’t work, you don’t get paid. In what world could she possibly feel better after a year?
Brittany Freeman Jean-Louis: Right. Those are the type of considerations that we have to make when we’re talking about different diagnoses, right? Like, what if I lost someone close to me, and I’m also going through a physical illness, right? Or what if I do have a mental health issue, you know, while I’m also grieving someone, right? What if I’m not the sole breadwinner in my family and the person that passed away was? And so now I have to figure things out. Not only do I have to grieve, but I also have to get up and find a job and work so that I can take care of things in my household unless I’m going to be faced with homelessness. So there’s so many things to consider, and kind of going back to that therapy lens, when we’re looking at things to consider, the more options, the more we expand the DSM, the more we can say, “OK, we can rule this piece out, but we can add this piece in. And this is kind of the perfect diagnosis for this person.” And not even just putting a label. Diagnosis is not about putting a label on a person. Again, it’s something that should be validating to a person, right? And so it helps us to treat the symptoms. And so as a therapist, when anyone walks into my office, they’ll ask, like, “So, so what do I have? Like, what did you diagnose me with?” And I said, “Honestly, I don’t even want to look at that. I just really want to look at: How do we treat the symptoms here? How do we focus on what you’ve been through, what the presenting problems are, what your goals are, and how we get you from that point A to that point B that you want to get to.”
Nora McInerny: One of the concerns I had is not just, “Well, how does this diagnosis show up in a clinical setting with a professional like Britt?” How does this show up culturally? Because the original press release about this being added to the DSM is actually from 2021. And there’s a line that says, “The duration of the person’s bereavement exceeds expected social, cultural, or religious norms.” Our norms are bad. Our norms are, “OK, the funeral’s over like, uhhhh, let’s get over it.” Or you know, “Oh, well, you’re remarried. Why would you ever cry about your husband? Doesn’t that make your new husband feel bad?” Yes, because he’s a monster. I don’t know if you’ve been on TikTok. My TikTok is filled with people casually diagnosing themselves and other people. And you don’t even have to be on TikTok. You can just have a conversation with a person, and they’ll notice, you know, maybe a person you know in common and their behavior and say, like, “Yeah, I mean, honestly, I think she’s in a manic episode!” Like, what are you talking about?
Brittany Freeman Jean-Louis: Right, right. It’s become so casual.
Nora McInerny: It’s become so casual!
Brittany Freeman Jean-Louis: Yeah. And when you’re talking about culture, I’m even looking beyond race and ethnicity, right? We can stop at just American culture, right? This American culture that inserts themselves into every situation. Everyone believes that they know everything. Everyone wants to use mental health diagnosis as adjectives, as opposed to really going to a professional, right? And talking about, you know, some of these issues. It’s, you know, the American culture of, “Let’s get on with it, and let’s move on.” Or let’s get over it and let’s move on. Right? And so these are the common things that I hear when it comes to grief. “Let’s move on.” “You should be over it by now.” Right? And we don’t understand this process is about getting through. Because there’s no other way through this process but through it, which means that there are going to be hills and valleys. There are going to be great days, and there are not going to be, you know, these great days that you have. You’re going to be constantly moving through this process, whatever that looks like for you, you know? But in this culture of having those three bereavement days, or you have to report back to work the next week after you just buried someone, those are things that we have to look at, right? Like, those are things that we have to look at in our culture to say, “How are we supporting grief?” What is the implication of basically saying, “OK, let’s give someone three days and then they can come back to work?” What does that implying?
Nora McInerny: It’s over. It should be over.
Brittany Freeman Jean-Louis: It should be over. You should be over it by now. And now we’re expecting you to come back to work. And let’s not even talk about people who have jobs that they don’t want to be in. People that are just like, “You know what? I hate this job, and I don’t want to be here, but now I have to, because there’s no choice and there’s no option. So now I have to stay here while I’m grieving. And then there’s more chronic stress that’s coming from this job that’s adding to my grief process.” And so these are the things that have to be considered, because at the end of the day, you cannot talk about grief, we can’t write up a diagnosis and not have experienced loss. There’s just no way. You can study as many people as you want. You can do as many case studies, all these different exploratory, qualitative research studies you can do, and if you have not experienced loss, you cannot understand how multifaceted and how different it is for so many people based on the internal piece and the external factors.
We’ll be right back.
—
I’m talking to my friend (and mental health professional) Britt about the recent decision to designate grief that lasts over a year as an official mental health disorder listed in the DSM – the handbook used by health care professionals and insurance companies to diagnose mental health conditions.
Nora McInerny: Calling it prolonged when it lasts for a year is … I was like, “Prolonged?! That is very fresh to me.” Like, a year is like no time at all.
Brittany Freeman Jean-Louis: Yeah, absolutely. I slightly remember the first year, because I feel like most of it, I was completely numb. And so any time I talk to people about, you know, my husband passing away, I always say that I felt like I was really numb that first year. And so I do remember once I hit the year mark, it was a relief for me, because I felt like I had made it through this marathon. But in fact, I feel like the race was just kind of getting started, especially when it came to those really tough emotions. And so I feel like year two was very sobering, and I started to kind of experience all of these different emotions. But there were still moments in year two where I felt numb. And right now, I’m in year three, and things haven’t stopped for me. There’s certain moments or things that I think about in regards to my grief that stop me in my tracks, and I still have to cancel the whole day, or I still have to lay in bed the entire day and continue to give myself grace. And I’ve entered year three of losing my husband.
Nora McInerny: And I do wonder, too, what this diagnosis means for people like my son. Because he was only 22 months, you know, and a pretty verbal little, little almost 2-year-old. Okay? Not to brag, very smart. What could he possibly understand? One day his dad was there and then he wasn’t anymore. And as he gets older, he’s understanding more, and his heart is breaking more. And he’s like, really only just now starting to grieve. Well, it’s been seven years. So obviously, he’s got a disorder. Every sort of, like, year, he’s going to know more and feel more, because he’ll be not more of a person, but he’ll have a bigger understanding of what this loss means.
Brittany Freeman Jean-Louis: Sure. And the more milestones that he has, you know, the older he gets, the more he’s going to, I’m sure, wish and want his father to be there, right? And that’s the bittersweet part of grief is that we will experience these really sweet moments. And then there’s going to be times where, as we experience the sweet, there’s also that anger that’s there, that, “Why is my person not here?” So there’s always going to be this longing for, you know, your loved one, which is one of the … persistent complex bereavement disorder, that’s one of the symptoms is kind of this longing for grief or this longing for the person. Of course there’s going to be a longing for the person, especially with each milestone that comes. Like, I’m going to be 40 this year, which is the exact same age that, you know, my husband passed away. And I’m thinking to myself, like, “He’s not going to be here for this really great milestone.” So I’m not sure what the day is going to look like. Right? I may want to celebrate. And I may celebrate. And there may be days prior to the celebration that I’m in bed, because it’s just a lot to think about: his existence or his presence not being there. So that numbness and that disbelief, that’s going to come up. And that’s obviously going to come up in every milestone in your own journey, because you’re always going to long for your person to be a part of that. That’s always going to happen. To be honest, I think once this diagnosis does come out, I think there could be a lot of backlash in a way, especially from people like you and I, that have experienced grief. I feel like there’s whispers of the conversation. So I think it’s going to start getting louder as we continue to move forward. There’s so many things that had to be taken into consideration, and we can’t talk about changes in the DSM without talking about COVID. Because in the COVID era, of course, we need to revise things and add things to the DSM, because there’s been a lot of COVID-induced symptoms, from depression to anxiety symptoms. And of course, the entire country has experienced losses due to COVID, which has activated a lot of grief. So I feel like the conversation is going to get louder, and I do believe that once this diagnosis comes, and once we start having folks that are diagnosed with it, once we start talking about how COVID has affected loss for people — and not just loss of people that have died, but the loss of freedom, the loss of trust, the loss of security that has cause and activated grief — I think the more we start to see that, the more the conversation’s going to start getting louder. So I’m not discouraged. I’m not discouraged by this. I’m actually very excited to really start to talk more about grief and death and loss and what that looks like, because this positive pop culture that we’re in, we have to … we have to break it up. We gotta break it up. We gotta break up this positivity psychology and this positive culture, and we got to start talking more about death and grief and losses and how that’s truly affecting us on a daily basis. And what are the other external factors that are causing grief to be prolonged, right? Not because of the internal parts, but because of the external things that are happening around us. When we’re talking about the BIPOC community, how is racism affecting that, right? How is homelessness affecting that, right? How is, you know, as we said before, the work culture in our society? You know, when we’re only giving three days for someone to grieve and then expect them to come back to work and fully function, right? How are all these external factors affecting prolonged grief? Because it surely is prolonging it. It’s the external factors that are happening, and that’s what we need to have more conversations about.
Nora McInerny: Dr. Brittany Freeman Jean-Louis, thank you so much. You are so wonderful. I always loved talking to you. And I think we’re going to have to talk more about this. We’re going to have to talk more about this. And if you are listening to this and you have thoughts, you have thoughts, you should call us and leave us a voicemail. It’s 612-568-4441. I want to hear your personal opinions, your professional opinions, your personal-professional opinions. Thank you so much, Britt.
Brittany Freeman Jean-Louis: Of course no problem. Thank you for having me.
I’m Nora McInerny, this has been “Terrible, Thanks for Asking.” Thank you so much for listening to this episode. Our team is: Marcel Malekebu, Jordan Turgeon, Megan Palmer, and Jeyca Maldonado-Medina. We are a production of American Public Media’s APM studios, where the executives in charge are Lily Kim, Alex Shaffert and Joanne Griffith. You can call us, call the show, get in touch with us at 612-568-4441. You can find me online at www.noraborealis.com.
I am the author of several funny books about sad things. I never talk about that, and I feel like I should. You can get them at … wherever you like to get books, but they’re for sure available on the internet.
Our executive producer is Beth Pearlman, and every time I have to say her last name, I’m like, “That’s not it. It’s, that’s not it.” But it is. It’s Beth Pearlman. Our music is by Geoffery Lamar Wilson.
We recorded this at my house, at my house in Phoenix, Arizona. And I was assisted by Stacy. She’s an elderly Shih-Tzu.
Stacy? She’s sleeping with her eyes open. This is so fricken freaky. Stacy? Stacy? She’s alive. Holy shit, though. Honestly. Every time, every time … her body, like, you can’t even tell she’s breathing.
There’s a breath. There we go.
In March, a New York Times article made the rounds titled, “How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer.” And if that sentence alone makes you roll your eyes and want to punch an inanimate object, you’ve come to the right place.
Nora read the article (twice) and had … some thoughts. So did her friend — and former TTFA guest — Brittany Freeman Jean-Louis.
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Transcripts may not appear in their final version and are subject to change.
How long should it take to grieve?
That is the title of a New York Times article that came out in late March.
It’s an article that was sent to me many, many, many, many, many, many times by some of you, by friends, by family. It was also an article that was served up to me by the New York Times app itself. As well as you know me, this app also knows me.
And it looked at me through the camera in my phone, through that front-facing camera, where my double chin and my nostrils live, at that view, and it said, “You know what, Nora? This is how you should start your Sunday,” with this sort-of-innocuously-titled article that … ya know? It got me.
I saw it, I clicked, I said right away, “Yeah, this is. This is how I want to spend my Sunday.”
And I read the article twice: once with a vengeful heart and once with an open one.
Because I am not a credentialed grief expert. I am a reluctant expert in my own grief, like anyone else who has ever experienced loss. I am an expert in my own losses. And I wasn’t sure I wanted to talk about this article on the podcast, because sometimes when people call this a grief podcast, I think, “Is it? I don’t think it is. I mean, we talk about grief. We talk about all kinds of hard and difficult things. But is it a grief podcast specifically? I don’t know.”
But I do know that grief is central to the origins of this show. It is central to the person that I have become since I experienced grief in its rawest forms. And that is no offense to my grandfather, who died when I was in fifth grade. That is no offense to the uncle who died when I was in middle school. But I truly did not understand what I was feeling during those losses as a kid.
But — and this is a part of the origin story of this episode, and if you’ve been here a while, you already know it, and you can fast forward 15 seconds while I catch up any newcomers — in 2014, I lost my second pregnancy. It was 11 weeks, six days, to that point, almost out of that first trimester, where you think, “As long as I can get through that, it’s smooth sailing, baby.”
(I say that with a huge eye roll, because is it ever smooth sailing? No. Anything can happen at any time. We can’t live like that, though. We can’t live believing that. We have to believe that at some point we are crossing bridges into some kind of safety. And I was almost there.)
And then five days later, my father, who had been diagnosed with esophageal cancer that had spread to his … lymph nodes — I think? Honestly, we weren’t paying that much attention to my dad, medically. He was very private. He’d been diagnosed in May. He died October 8th. Five days after my miscarriage.
And then six weeks after my dad died, my husband Aaron died. And he had had brain cancer for, as far as we knew, three years. But when there’s a tumor about the size of a golf ball that gets extracted from your head after you have a seizure, you gotta think maybe it was in there for a little while longer. It was there. It was sort of biding its time. It was a little stowaway when we met and fell in love and thought we were, again, crossing that bridge into a safe adulthood, where we had found a partner and were going to share a home and share a life and get married and all of that.
And we did those things. We just didn’t have very long to do them.
So that experience, that sort of triple loss, that was the first time I understood that I was experiencing grief.
And I thought, in all of my wisdom, which was none, I thought I had the key. I thought I had the key to grief, which was this (pull up a chair, listen closely):
I was going to stay as busy as possible for that first year … because after a year, the grief would be over. It would expire, and I would have outrun it. I would have avoided it completely. I would have been a genius – an innovator, truly, in the grief space. I thought I had found a code, cracked it. I was a woman in STEM, finally.
And if you can believe it, all of the things that I did to keep myself busy …
things like: raising my child …
things like: bingeing “Real Housewives” while drinking a bottle of Skinny Girl Margarita, which is not the serving size, but it was for me (anything is a serving size if you try hard enough) …
things like: working – not at the job that I lost (which is, again a complicated topic, because I did not lose it, but I did leave after being sort of asked if I was going to come back when the obvious answer was, “No, I can barely form a thought”) …
things like: writing my first book in the six months after Aaron died.
things like: coming up with the idea for this podcast and tweeting out into the universe, “Who knows how to make a podcast?” and getting connected to Hans Buetow at APM and starting to work on it …
All of those things did not actually help me avoid grief. They kept me from processing it. They kept me from healing, in a lot of ways.
And around the year mark, which is also when I met my current husband, I had a full-on breakdown. Full-on.
The one-year mark was not the end of anything for me. It was the beginning. It was the beginning. And it was really, really, really hard. I wrote about that in my second book, No Happy Endings, because everybody sort of thought that I was better … because I had met somebody and because enough time had passed.
And I was so not better.
I’ve spent so much time in the past 7+ years with people who have experienced profound loss, and that’s only been amplified by the past few years and being surrounded in the news and in all of our interactions by people who are experiencing the loss of their normal lives, or their safety, or their loved ones. There’s just so much suffering in the world. And in my conversations, in my experiences, everybody thinks that the way they are feeling after the death of somebody, after a huge, life-changing loss of any kind, is wrong. They are wrong for being in this kind of pain and they shouldn’t feel this way anymore.
And so back to that article in the New York Times. I read that article at first feeling incredibly defensive. At first feeling incredibly defensive for myself, for the people I know, for the people I don’t know, who already think that something is wrong with them for their normal human experience.
And I felt defensive, because the subhead to this article is: “How long did it take to grieve? Psychiatry has come up with an answer.”
And in the article, they talk about the Diagnostic and Statistical Manual of Mental Disorders, which is hard to say, and it’s also known as the DSM. This is the literal handbook used by health care professionals here in the U.S. when diagnosing mental disorders. It’s known as psychiatry’s Bible. And the latest edition of the DSM is the DSM-5, and it includes a controversial new diagnosis, which is: prolonged grief disorder.
And the article describes prolonged grief disorder, saying essentially that it’s people who are not feeling better after a year. A year!
Ugh.
A YEAR? REALLY?
In the beginning parts of grief, I’d operated under the assumption that a year was the expiration date. That I really ought to be feeling better after a year. But it took me months — seven, eight months — to even go see a mental health professional after Aaron died. I did not see anybody while he was sick, by the way, when obviously I was also grieving his health, the loss of our normal life, our future, anticipating in many ways the life that I would have to live without him eventually.
I have written, in the past, op-eds for The New York Times. I wrote I think most recently about the fact that we are not a culture that allows people to grieve, that grieving itself is a privilege. And it’s one that I had, that I had as a middle class white lady, and also that a lot of people don’t. We have in this country maybe three to five business days of paid bereavement leave when you lose a spouse, a sibling, a child, a parent, if, if, if, if, you have a full time job with benefits.
Three to five business days is not even really enough time to plan a funeral.
So that’s why I wanted to talk about this article on my podcast. Because there’s just so much to it.
I sent the article to my friend Brittany Freeman Jean-Louis, who you might remember from two episodes with us – “Untangling Knots” and “What’s Going to Happen to Me?” It was a two-parter where we talked about her losses: the loss of her mother, the loss of her father, the loss of her husband.
Brittany is not just a griever. She is also a mental health professional. She’s got her own grief trifecta going on. And she has a mental health practice.
I sent it to her, and immediately she replied and said, “I’m going to need a minute with this.” We’re texting back and forth after she’s had time to read it, and I said, “Would you come on TTFA and talk with me about this?” And she said yes.
So on a rainy day in Phoenix, Arizona, which is very rare but felt appropriate, I called up Brittany, and we talked about grief as a diagnosis. We talked about prolonged grief disorder. It is in no means an extensive conversation, but I do hope it is the beginning of one within this community and out in the world. So if you would like to contribute to it, if you have some thoughts on this episode, on that article, please call us, let us know: 612-568-4441.
Here we go.
Nora McInerny: I had to call you. Well, first of all, I had to text you. I had to send you a text storm. Then I had to give you time to process. [laughs] And then I had to ask you to come discuss with me this New York Times article — not only as a griever, as a person who has experienced a lot of loss, I would say that the triple crown of loss, right? Mom, dad, husband.
Brittany Freeman Jean-Louis: Yes. Grief trifecta. That’s what I call it. The Trifecta: 2017, 2018, 2019. Just all in a row. And it’s just 2022.
Nora McInerny: And it’s only 2022.
Brittany Freeman Jean-Louis: And it’s just 2022.
Nora McInerny: And so I wanted to first ask: Is your grief over?
Brittany Freeman Jean-Louis: Absolutely not. I don’t believe at all that grief can be over. I do believe that grief is an extension of the love that we have for the people that we have lost. And so as long as you’re going to love them, that’s as long as you’re going to grieve them.
Nora McInerny: A lot of people sent me this article, and I read it with an open mind. I really did. I was like, “OK, yeah, let’s see what’s going on. You know? Oh, maybe there’s something …” But I will tell you that when I read that prolonged grief was the year mark, I almost crushed my iPhone in my bare hand.
Brittany Freeman Jean-Louis: Yeah. Yeah. It’s so bizarre because of course, I’m reading this through two different lenses, right? I’m reading this through the lens of a CEO of a mental health clinic, as a therapist, and I’m also reading it through this lens of this grief trifecta and losing three people, having these multiple losses back to back, from 2017 through 2019. And I have to say that I can see both sides, and yet I’m still leaning towards, “This is absolutely ridiculous.” You cannot be over grief in one year, and you can’t be judged if you are grieving over a year’s time. There’s just no possible way that you cannot continue with your grief.
Nora McInerny: When you say from both sides, and seeing both sides, I want to talk more about that because I did assume that a year was the — a year is the social expiration date. I will tell you that much. People are like, “Well it’s been a year. Let’s [clicks tongue] you know, keep it moving.” But I had done my best to sort of keep myself busy, avoid feeling anything too deeply. And, you know, I just had, like, a full-on breakdown at the year mark, a full-on breakdown. And I would say years two and three were even worse. And I did feel a certain sense of maybe shame that I wasn’t fully better, and I didn’t even really know how to talk about it with a therapist. I was eventually diagnosed with PTSD from having watched these violent events that I had to process. I did EMDR. These things helped. However, the other side of me feels so fiercely defensive of people who are just still feeling that loss. I still feel that loss now, and it’s been seven years! And I just feel very, very defensive of what is a natural human reaction to loss, to losing the people that we love. But I want to hear you, not as my friend and fellow widow with dead parents, but how you feel about this as a professional.
Brittany Freeman Jean-Louis: Sure. So, as a CEO of a mental health clinic, I think that it is very important for the DSM to be expanded, because we need to continue to keep treatment individualized. And so when we are able to expand, it’s two-fold. We’re able to continue to keep treatment individualized, but we’re also able to be paid for the work that we’re doing. And unfortunately, commercial insurance companies don’t truly pay therapies what they’re worth, right? And so we can expand diagnosis, we can continue to ensure that folks are getting the proper treatment when they come in. And we’re also ensuring that we can actually get paid for more things that we are seeing in the therapy session.
Nora McInerny: To me, there is a difference between, like, just feeling numb and feeling, like … isn’t that not just grief, but some of, like, the byproducts of grief? Like, I mentioned PTSD. You are in shock for a while. It takes a while for you to even, like, feel what might be grief.
Brittany Freeman Jean-Louis: Absolutely. And I do believe that that is something that the DSM does touch on. So there really is no grief disorder in the current DSM. So we’re in the DSM-5. And so this particular article mentioned that in the next one coming up, that that prolonged grief disorder would be in the DSM. However, I like the fact that, you know, there are certain disorders that they said, “OK, let’s rule out grief for diagnosing someone that let’s say has an adjustment disorder,” which is basically a stress disorder that comes from an acute stressor that you’ve experienced. You’re still going to be grieving within, you know, three months or even six months, right? But then somehow, I don’t know how we got to 12 months. I don’t know who decided that that was the marker for you being done, you know, with … with grief. Because there are, like you said, so many byproducts of it. And you know, there’s the primary loss of losing a person, and then there’s also the secondary losses of losing someone, right? So you’re losing the function of the person that was in your life. And I’m speaking from my experience. I lost a team player, you know? I lost someone that played a very significant role in my life. And I had to adjust from being a two-person household to now going down to a one-person household, which means that everything is now on me. So I have to, you know, go to the grocery store. I have to put oil in my car. I have to, you know, make sure that all the bills are paid, and I have to make sure they’re paid on time. I have to rearrange all of the systems that I’ve created with this other person, and now I have to recreate this trajectory of my new life without this person. So of course, there’s going to be secondary things that pop up, because my life has literally changed in the matter of a day, that day that my person passed away.
Nora McInerny: And you’re also losing this person who had this shared history with you. Who also held these parts of you too, you know? Who had filed away inside of him, you know, these different versions of Britt that had existed, too. And it is a lot. And it takes a while even for you to realize what all of those things are, because they’re not all revealed to you in a year.
Brittany Freeman Jean-Louis: Absolutely. And even with you saying that, you know, it just reminds me of the journey, you know? Like, when you get married, the vows that you take to continue to be with each other and to walk out life and walk through life with each other, you’re losing the witness to your life. You know? The things that you’re doing on a regular basis, the support that you need, the level of support that you need to do what you need to do on a regular basis, that person is gone now. Right?
Nora McInerny [00:27:17] And do you have access? Who gets to see what the verbiage of what’s going in? Because, you know, the details are not in this New York Times piece.
Brittany Freeman Jean-Louis: Yeah. So I wondered that also, myself. Specifically, I wonder the cultural piece, because I don’t believe that the symptoms that are listed in the DSM are for people that are from the BIPOC community. Our symptoms look very different than what’s listed, based on our cultural experience in this country, right? And that’s like a whole different podcast for a whole different day. But I know that there are committees of people that are hired that look at certain things. I wanted to kind of give a little bit of education of what that looks like, just so that people can get a sense of what perhaps this prolonged grief disorder will look like — just so that, you know, people get a sense of what the criteria is. So, in regards to this persistent complex bereavement, of course, it’s experiencing the death of a close loved one. “The following symptoms are basically experienced on more days than not, which has persisted for 12 months.” And so when I think of more days than not, I’m like, “So again, who determines how many days that you have these particular symptoms?” So listen to these symptoms, right. So there’s: a yearning or longing for the deceased, intense sorrow or emotional pain, preoccupation with the deceased, and preoccupation with the circumstances surrounding the death of the person. So that’s basically saying you’ve experienced one of those symptoms, on more days than not, persisting for 12 months. And I’m just like … these are definitely things that persist after a year! I’m still yearning and longing for the people that have passed away. There’s still intense sorrow and emotional pain. There’s still thoughts about my person that passed away, or my people that have passed away. There’s still a preoccupation surrounding the death of the person, the circumstances, right? And so there’s other criteria that they put in there as well. “At least six of the following symptoms are experienced on more days than not, and have persisted for over 12 months.” So there’s these two criteria. There’s distress to death and then the social identity disruption. So, distress to death is: It’s hard to accept the death. There’s this disbelief or emotional numbness over the loss. There’s bitterness or anger related to the loss. There could be self-blame, excessive avoidance of reminders of the loss. And that last one hits me because to this day, now remember, I’m in year three. My husband collapsed in a Best Buy, right? And he died in a Best Buy. I cannot, to this day, I cannot step foot in a Best Buy. And so I think that that’s a normal response for anyone that has lost someone close to them, that has experienced this close type of loss. It’s going to be hard to go back to certain places. They’re going to be triggers for you that can last for way longer than a year.
We’ll be right back.
Nora McInerny: A point of this article that was a red flag for me is, “Oh, let’s kick off some drugs to help treat this.”
Brittany Freeman Jean-Louis: Absolutely. That was a red flag to me, because I think that something that was at the very beginning of the article. And I’m just like, you know, is this the push? Like, is this the real push, that we’re looking for medication immediately to medicate people if they, at this year mark, continue to have, you know, these grief symptoms? Let’s just kind of throw medication at them, because they’re still grieving. And there’s nothing wrong, of course, with medication. They’re folks that need medication to help regulate their emotions. They’re folks that need medication to get through their daily lives. Yet at the same time, the article just seemed to kind of push that as like … that’s the first thing that we’re looking to do.
Nora McInerny: And also, I say this as a person who did not get any sort of medication after or while Aaron was sick. And, I mean, the grief that I had started before he died, you know? It was the year before he died, watching him deteriorate, and having, you know, really no mental health support around that. I remember people saying, like, “Maybe you should see a therapist.” I was like, “When? When would I do that? When would I do that?” And you know what would have really helped me? Aaron had Ativan. Me having Ativan could have helped, right? Like, maybe I could have slept at night. Maybe that would have been helpful for me.
Nora McInerny: There’s this part of the article that says, and I think you touched on this too, you know, having this in the DSM will also allow professionals to, like, get paid, which is a good thing. I’m not saying that is a negative thing. I’m not saying, “Oooooh, let’s look through this book and see what I can get paid for.” But you know, we are all, everybody, beholden to this bizarre system. Health insurance, I do not understand it. If you are a person who works in health insurance who thinks it makes sense, please give me a call, because I got a lot of questions. Because I can imagine how difficult it could be if you’re a mental health care provider. Someone walks in the door. They are obviously having trouble processing this grief, moving forward with it, and not getting stuck. And the thing is also, you and I both know, we’ve seen people who are literally stuck. People who I could, as not a professional, who has not seen the next episode of the DSM … issue! The next episode. [laughs] “That’s in the DSM season six.” I can look and say, “Oop, yep, this person. Yeah, they are, they are stuck in it. Like, it has been X amount of years and they are at the exact same place they were that first day.” And that is frightening, right? That is something that needs help and maybe would benefit from it being named. But at a year?! I really struggle with that. I really do.
Brittany Freeman Jean-Louis: And that’s where, even though I’m able to look at this through two lenses, I still kind of go back to, “Yeah, a year is just not it. That’s just not the timeframe we should look at.” And when we’re talking about diagnosis, right? A diagnosis should be something that’s empowering and not invalidating. So and when I say empowering, it should inform and normalize, right? So it should inform you, “These are your symptoms. This is what you’re going through, right?” Which is very validating. When someone can name and list the things that you’re going through and normalize it and say, “This is a normal thing,” that’s validating, right? While invalidation can cause hurt and confusion, which causes an unhealthy view of that person. Right? And then that’s where stigmas are birthed. So ultimately, if you’re putting someone in a situation where you’re saying, “Hey, you have this disorder,” and the diagnosis and the symptoms under this diagnosis may seem validating to you, and yet at the same time, once we get to that year mark, once we say like, “OK, but if you’ve experienced any of these things over a year …” that’s where the invalidating piece comes in for me. And that’s where I disagree, as a therapist and as a multi-loss-griever.
Nora McInerny: Every year, right? Every fall, I have the same reaction. And it starts in October, when I had my miscarriage and then my dad died, and then it is sort of ramping up and ramping to Aaron dying. And I just am like, at my worst. I’ve done it before. I did it when Taylor Swift released the song “Cardigan.” I just laid in bed and I just cried. I just cried and cried and cried and cried. And I put this episode of the podcast out that was basically me, like, talking into my phone, crying, weeping into my phone one November night, when I was traveling, and it all just hit me and I just like, cried it out. And I got a message — and I know this came from a person who really, really, really meant well and who might hear this, which is why it may or may not make it into the episode — but I got this message that was like, “Hey, I heard your episode, and you know, I can help you, like, take that pain away.” And I just thought, like, okay … this sort of yearly, you know, rip my guts out kind of pain, I don’t want it to go away, if that makes sense. I don’t want to ever be a person who’s like, “Well, yeah, you know, my husband died and he was 35, the father of my child. But you know what? That was a long time ago.” I think it makes perfect sense to let yourself be anguished by, you know, human suffering, by, you know, your own suffering. I think that’s OK. I could be wrong. I have no professional training. But getting that message, I was like, “Oh my God, you heard that and thought, like, ‘Oh, this is a problem.’” This is like a yearly ritual for me! And not to say that doesn’t happen at other times, Britt, because yesterday Ralph did this thing … it was watching Aaron, like, emerge from him. He did this funny little smile, waved his hand, like, waved me off in this way that Aaron used to do, like, humorously. And I just thought, like, what?! Like, where did that come from?
Brittany Freeman Jean-Louis: Where did it come from? And then it’s like, “What am I supposed to do with the emotions that come up when that happens?”
Nora McInerny: Yes, yes, yes.
Brittany Freeman Jean-Louis: I think you’re spot on with it. First of all, just to kind of go back to something that you said: I don’t think that our culture really educates about grief. I think we’re just starting to have the conversation. Just like, you know, we just started to have conversations about mental health, right? And you know, this whole thing where it’s OK to not be OK. Right? The discussions about, you know, suicide, right? Those things are becoming something that we’re talking more about. We’re normalizing. And I think grief is one of those things that we do not talk a lot about. And grief is one of those things that we need more education, we need to talk more about death. And I know that that sounds a little ridiculous, because in our culture, we want to be happy. We want to be satisfied. We want to have this, you know, “Let’s do whatever we want, let’s live life to the fullest.” And it’s like, OK, yeah, but we need to stop and talk about death too. We need to talk to our kids about death, right? And not make it scary, but talk to them so that they understand that this is a natural part of life, so that we can gather more information that can be used when we’re talking about diagnosing someone, right? And when we’re talking about validating someone that has experienced grief, because think about it: People still don’t know what to say. People still don’t know what to do when someone dies. Someone that they know is close to them, someone passed away, people … we still don’t know what to say. We still don’t know what to do. And I think that that’s unacceptable. I really do. And I think it’s really something that we have to talk way more about. Because grief is so multifaceted, and it’s so misunderstood at the same time. And it’s multifaceted in the sense that it’s not just sadness, right? And I think that’s where the diagnosis piece trips me up a little bit, too, because even in sadness, there’s clarity. There’s education. How much have you learned about yourself? How much have you grown since you’ve experienced the loss of a loved one? How many times have you experienced joy, you know, in the midst of your grief, right? And I don’t even want to separate joy from grief, because joy is a part of grief. And so we have to define grief better so that it’s not just this one thing, which is sadness only. And that’s what we’re kind of surrounding this diagnosis around, just this one piece, which is that sadness, right? But we need to talk more about there are multiple emotions that are related to grief that we have to recognize, and we have to include that in the holistic experience of having a grief process.
Nora McInerny: Having a grief process. Exactly. And some cultures within American culture do have them. And you are so, so lucky if your culture embraces and helps you process grief. And also you’d be considered lucky if you have a job that lets you do that. I wrote an op-ed for the New York Times a million years ago, it feels like, but we can’t talk about grief without talking about the privilege it takes to grieve, to be able to grieve. And most people, most Americans, have maybe two to five business days of paid bereavement leave. And after that, you are on your own. And that is if and only if you have a full-time job that offers you benefits. And our mutual friend, Moe, she was cutting hair like a week, maybe two weeks after her husband died by suicide, because you don’t work, you don’t get paid. In what world could she possibly feel better after a year?
Brittany Freeman Jean-Louis: Right. Those are the type of considerations that we have to make when we’re talking about different diagnoses, right? Like, what if I lost someone close to me, and I’m also going through a physical illness, right? Or what if I do have a mental health issue, you know, while I’m also grieving someone, right? What if I’m not the sole breadwinner in my family and the person that passed away was? And so now I have to figure things out. Not only do I have to grieve, but I also have to get up and find a job and work so that I can take care of things in my household unless I’m going to be faced with homelessness. So there’s so many things to consider, and kind of going back to that therapy lens, when we’re looking at things to consider, the more options, the more we expand the DSM, the more we can say, “OK, we can rule this piece out, but we can add this piece in. And this is kind of the perfect diagnosis for this person.” And not even just putting a label. Diagnosis is not about putting a label on a person. Again, it’s something that should be validating to a person, right? And so it helps us to treat the symptoms. And so as a therapist, when anyone walks into my office, they’ll ask, like, “So, so what do I have? Like, what did you diagnose me with?” And I said, “Honestly, I don’t even want to look at that. I just really want to look at: How do we treat the symptoms here? How do we focus on what you’ve been through, what the presenting problems are, what your goals are, and how we get you from that point A to that point B that you want to get to.”
Nora McInerny: One of the concerns I had is not just, “Well, how does this diagnosis show up in a clinical setting with a professional like Britt?” How does this show up culturally? Because the original press release about this being added to the DSM is actually from 2021. And there’s a line that says, “The duration of the person’s bereavement exceeds expected social, cultural, or religious norms.” Our norms are bad. Our norms are, “OK, the funeral’s over like, uhhhh, let’s get over it.” Or you know, “Oh, well, you’re remarried. Why would you ever cry about your husband? Doesn’t that make your new husband feel bad?” Yes, because he’s a monster. I don’t know if you’ve been on TikTok. My TikTok is filled with people casually diagnosing themselves and other people. And you don’t even have to be on TikTok. You can just have a conversation with a person, and they’ll notice, you know, maybe a person you know in common and their behavior and say, like, “Yeah, I mean, honestly, I think she’s in a manic episode!” Like, what are you talking about?
Brittany Freeman Jean-Louis: Right, right. It’s become so casual.
Nora McInerny: It’s become so casual!
Brittany Freeman Jean-Louis: Yeah. And when you’re talking about culture, I’m even looking beyond race and ethnicity, right? We can stop at just American culture, right? This American culture that inserts themselves into every situation. Everyone believes that they know everything. Everyone wants to use mental health diagnosis as adjectives, as opposed to really going to a professional, right? And talking about, you know, some of these issues. It’s, you know, the American culture of, “Let’s get on with it, and let’s move on.” Or let’s get over it and let’s move on. Right? And so these are the common things that I hear when it comes to grief. “Let’s move on.” “You should be over it by now.” Right? And we don’t understand this process is about getting through. Because there’s no other way through this process but through it, which means that there are going to be hills and valleys. There are going to be great days, and there are not going to be, you know, these great days that you have. You’re going to be constantly moving through this process, whatever that looks like for you, you know? But in this culture of having those three bereavement days, or you have to report back to work the next week after you just buried someone, those are things that we have to look at, right? Like, those are things that we have to look at in our culture to say, “How are we supporting grief?” What is the implication of basically saying, “OK, let’s give someone three days and then they can come back to work?” What does that implying?
Nora McInerny: It’s over. It should be over.
Brittany Freeman Jean-Louis: It should be over. You should be over it by now. And now we’re expecting you to come back to work. And let’s not even talk about people who have jobs that they don’t want to be in. People that are just like, “You know what? I hate this job, and I don’t want to be here, but now I have to, because there’s no choice and there’s no option. So now I have to stay here while I’m grieving. And then there’s more chronic stress that’s coming from this job that’s adding to my grief process.” And so these are the things that have to be considered, because at the end of the day, you cannot talk about grief, we can’t write up a diagnosis and not have experienced loss. There’s just no way. You can study as many people as you want. You can do as many case studies, all these different exploratory, qualitative research studies you can do, and if you have not experienced loss, you cannot understand how multifaceted and how different it is for so many people based on the internal piece and the external factors.
We’ll be right back.
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I’m talking to my friend (and mental health professional) Britt about the recent decision to designate grief that lasts over a year as an official mental health disorder listed in the DSM – the handbook used by health care professionals and insurance companies to diagnose mental health conditions.
Nora McInerny: Calling it prolonged when it lasts for a year is … I was like, “Prolonged?! That is very fresh to me.” Like, a year is like no time at all.
Brittany Freeman Jean-Louis: Yeah, absolutely. I slightly remember the first year, because I feel like most of it, I was completely numb. And so any time I talk to people about, you know, my husband passing away, I always say that I felt like I was really numb that first year. And so I do remember once I hit the year mark, it was a relief for me, because I felt like I had made it through this marathon. But in fact, I feel like the race was just kind of getting started, especially when it came to those really tough emotions. And so I feel like year two was very sobering, and I started to kind of experience all of these different emotions. But there were still moments in year two where I felt numb. And right now, I’m in year three, and things haven’t stopped for me. There’s certain moments or things that I think about in regards to my grief that stop me in my tracks, and I still have to cancel the whole day, or I still have to lay in bed the entire day and continue to give myself grace. And I’ve entered year three of losing my husband.
Nora McInerny: And I do wonder, too, what this diagnosis means for people like my son. Because he was only 22 months, you know, and a pretty verbal little, little almost 2-year-old. Okay? Not to brag, very smart. What could he possibly understand? One day his dad was there and then he wasn’t anymore. And as he gets older, he’s understanding more, and his heart is breaking more. And he’s like, really only just now starting to grieve. Well, it’s been seven years. So obviously, he’s got a disorder. Every sort of, like, year, he’s going to know more and feel more, because he’ll be not more of a person, but he’ll have a bigger understanding of what this loss means.
Brittany Freeman Jean-Louis: Sure. And the more milestones that he has, you know, the older he gets, the more he’s going to, I’m sure, wish and want his father to be there, right? And that’s the bittersweet part of grief is that we will experience these really sweet moments. And then there’s going to be times where, as we experience the sweet, there’s also that anger that’s there, that, “Why is my person not here?” So there’s always going to be this longing for, you know, your loved one, which is one of the … persistent complex bereavement disorder, that’s one of the symptoms is kind of this longing for grief or this longing for the person. Of course there’s going to be a longing for the person, especially with each milestone that comes. Like, I’m going to be 40 this year, which is the exact same age that, you know, my husband passed away. And I’m thinking to myself, like, “He’s not going to be here for this really great milestone.” So I’m not sure what the day is going to look like. Right? I may want to celebrate. And I may celebrate. And there may be days prior to the celebration that I’m in bed, because it’s just a lot to think about: his existence or his presence not being there. So that numbness and that disbelief, that’s going to come up. And that’s obviously going to come up in every milestone in your own journey, because you’re always going to long for your person to be a part of that. That’s always going to happen. To be honest, I think once this diagnosis does come out, I think there could be a lot of backlash in a way, especially from people like you and I, that have experienced grief. I feel like there’s whispers of the conversation. So I think it’s going to start getting louder as we continue to move forward. There’s so many things that had to be taken into consideration, and we can’t talk about changes in the DSM without talking about COVID. Because in the COVID era, of course, we need to revise things and add things to the DSM, because there’s been a lot of COVID-induced symptoms, from depression to anxiety symptoms. And of course, the entire country has experienced losses due to COVID, which has activated a lot of grief. So I feel like the conversation is going to get louder, and I do believe that once this diagnosis comes, and once we start having folks that are diagnosed with it, once we start talking about how COVID has affected loss for people — and not just loss of people that have died, but the loss of freedom, the loss of trust, the loss of security that has cause and activated grief — I think the more we start to see that, the more the conversation’s going to start getting louder. So I’m not discouraged. I’m not discouraged by this. I’m actually very excited to really start to talk more about grief and death and loss and what that looks like, because this positive pop culture that we’re in, we have to … we have to break it up. We gotta break it up. We gotta break up this positivity psychology and this positive culture, and we got to start talking more about death and grief and losses and how that’s truly affecting us on a daily basis. And what are the other external factors that are causing grief to be prolonged, right? Not because of the internal parts, but because of the external things that are happening around us. When we’re talking about the BIPOC community, how is racism affecting that, right? How is homelessness affecting that, right? How is, you know, as we said before, the work culture in our society? You know, when we’re only giving three days for someone to grieve and then expect them to come back to work and fully function, right? How are all these external factors affecting prolonged grief? Because it surely is prolonging it. It’s the external factors that are happening, and that’s what we need to have more conversations about.
Nora McInerny: Dr. Brittany Freeman Jean-Louis, thank you so much. You are so wonderful. I always loved talking to you. And I think we’re going to have to talk more about this. We’re going to have to talk more about this. And if you are listening to this and you have thoughts, you have thoughts, you should call us and leave us a voicemail. It’s 612-568-4441. I want to hear your personal opinions, your professional opinions, your personal-professional opinions. Thank you so much, Britt.
Brittany Freeman Jean-Louis: Of course no problem. Thank you for having me.
I’m Nora McInerny, this has been “Terrible, Thanks for Asking.” Thank you so much for listening to this episode. Our team is: Marcel Malekebu, Jordan Turgeon, Megan Palmer, and Jeyca Maldonado-Medina. We are a production of American Public Media’s APM studios, where the executives in charge are Lily Kim, Alex Shaffert and Joanne Griffith. You can call us, call the show, get in touch with us at 612-568-4441. You can find me online at www.noraborealis.com.
I am the author of several funny books about sad things. I never talk about that, and I feel like I should. You can get them at … wherever you like to get books, but they’re for sure available on the internet.
Our executive producer is Beth Pearlman, and every time I have to say her last name, I’m like, “That’s not it. It’s, that’s not it.” But it is. It’s Beth Pearlman. Our music is by Geoffery Lamar Wilson.
We recorded this at my house, at my house in Phoenix, Arizona. And I was assisted by Stacy. She’s an elderly Shih-Tzu.
Stacy? She’s sleeping with her eyes open. This is so fricken freaky. Stacy? Stacy? She’s alive. Holy shit, though. Honestly. Every time, every time … her body, like, you can’t even tell she’s breathing.
There’s a breath. There we go.
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