Prolonged grief disorder: The diagnosis for being stuck in an endless loop of grief

In the beginning it felt like total fog.

You never really know what grief will feel like until it hits you. And even then, it’s different for every one of us. Sundari Malcolm’s mom passed away in 2007, and in the months that followed, her life fell apart.

You know, right after she died, I laid on the couch and watched the Food Network and drank a lot of wine and didn’t do a whole lot of much. I was really kind of frozen in my grief at that point. I remember I would wake up and I don’t even know how to explain this, but it’s like for a split second, you don’t remember it’s happened. And there is this like split second of like, Oh, it’s another day. And then it’s like a truck hits you.

For seven years, Sundari had been taking care of her mom, who had breast cancer, and even though she knew her mother was dying, nothing braced her for what came after.

I wasn’t prepared for the grief. I wasn’t prepared about how many different places grief would touch. Like something like a phone, something like a song or a smell, a holiday, seeing other family. Like I did not know how much it was going to shift. I don’t know that there is a way to prepare for that.

After the initial fog and numbness, she felt a lot of anger and then sadness. Eventually, things got so unbearable, Sundari decided to escape.

For me, it became a holy shit. I got to get out of here. This is not working for me. Like I felt really stifled in my grief.

She jumped on a plane and just spent the next few months traveling.

I had seen Eat Pray Love. I was a nineties baby. So Julia Roberts is my like. I was, like a huge fan.

You want to go away for a year? I used to have this appetite for my life, and it’s just gone. I want to go someplace where I can marvel at something.

I love that it was this idea that I could hit the road and have these really deep, meaningful experiences in solitude. There was such a freedom and being on the road like no one knew my story. Right? Like I could meet people they didn’t know. My mother had just died. So it wasn’t the first thing they were asking me. It was just, Where are you from? I could say whatever I wanted. I didn’t have to bring it up, you know, and that felt good. And there’s a difference between attaching to the trauma of a story and allowing a story to move you forward. And I think the attachment to it was released when I was able to get out of my environment.

She went to India, Italy and then Guatemala. And along the way, Sundari regained her excitement for the world around her. The trip inspired her to channel her pain into a new career. She’s now a grief doula, a trained, non-medical professional whose job is to provide emotional and social support through bereavement. She’s also director of Bipoc Wellbeing for the Dinner Party. That’s a nonprofit that helps young people who have suffered significant loss.

I work with people holistically, meaning we talk about things like, What are you eating? What are you drinking? What are you watching? Who are you surrounding yourself with? But we also talk about how are you feeling in this moment? We talk about the different triggers. We talk about how to build your calendar year so that you understand what it’s going to be like around Christmas and Thanksgiving. We talk about conversations and how to have them with your family, how to manage things with your friends, how to move forward in life. And I think that becomes my main focus is how do we make you feel good in spite of? How do we inject joy? How do we manage your day to day? So that’s grief doula work.

It has now been 15 years since her mom died. There are still moments when grief hits or seemingly out of nowhere, but she has learned to take it as it comes.

You look back at things like that, it was like, I can say the name now, I can… And so I think for everyone, I always liken it to the ocean like it’s waves and it’s just in and out. And just like every wave is different than the one before. Like, your grief wave is going to keep changing and you have to keep meeting it and learning it and figuring out how to ride it.

Death is universal. We all know that. But in the last few years, more than 6 million people around the world have died from COVID. Not to mention those who die during wars of gun violence and of natural causes. It feels like all of us are grieving in some way. But what does that mean? And where do we go from here? Well, in this episode, we’re going to embrace grief in all its ugliness and messiness, but we’re also going to learn the tools to help ourselves and others going through grief. We’re going to take a look at a new medical diagnosis. It’s called prolonged grief disorder. And for those who stick around, we’re gonna have a little surprise for you at the end. I’m Dr. Sanjay Gupta, CNN’s chief medical correspondent. Grab your tissues. Take a deep breath. It’s time to start chasing life.

My story is not an original one by any means. So I had an early loss. My dad died when I was about 13, going on 14. And so for me, the the pain of the grief, the suffering through it, and this drive to kind of figure out what am I going to do with my life coincided. And so it was about how can I help people with this? This stinks.

That’s Wendy Lichtenthal. She’s a psychologist and she’s director of the Bereavement Clinic at Memorial Sloan Kettering Cancer Center in New York City. Like Sundari Malcolm, she has dedicated her life to helping others manage their grief.

Everything is movement. I say to people. It’s all forward movement. It’s all part of your process and part of your process for all these reasons that you couldn’t go to that place of grief three months ago and now it’s really coming up. That makes sense. I understand why it’s coming up more now. Let’s attend to it now.

Since we are born or since we can sort of understand life as humans, we do know that we will die one day and that the people around us will die. I mean, that is a a certainty, at least it is for now. And I think it sort of raises this question, Wendy, from an evolutionary perspective, why do we grieve? What is the purpose of grief?

So I think the frame that we we look at this with is what the purpose of relationships and attachments are and the evolutionary benefit of the way we attach right that it promotes survival for parents to protect their young and for the young to yearn for union with the safety of their parent. Right. So that attachment preserves life. You know, thinking of an infant, a toddler with their primary caregiver and thinking of that moment of separation, I think of when the adult walks out of the room and you can imagine, conjure up in your mind this child wailing. You can see all the emotions that a lot of us feel when we’re grieving. Rage, like, don’t you leave me. And utter terror. Please, please, please don’t leave me. And that is that separation distress reaction. The child is yearning for reunion. And so when we are grieving and as we get older and are observing our own grief and saying, what the heck am I experiencing here? That is because it it’s this belly level reaction to separation. We are wired to protest it.

If we just talk about the here and now for for a second, because that’s very visual, what you described, you know, with a child and then sort of trying to imagine that that loss of attachment, even as someone gets older, is it dangerous to our bodies and our brains? I mean, that that level of loss, do we experience something that’s damaging in any way to our bodies and brains?

It’s a controversial question you’re asking because, you know, you and I both know there’s a lot of research about stress responses and what they do, the toll they take on on the body. But I don’t think that’s a helpful frame. Right, because then we start worrying about being upset and start thinking about I’m still grieving. Is there something wrong? Am I hurting myself? And and I don’t want to promote those ideas. So a different way to perhaps think about what is happening is to understand that stress response and it is natural to feel dysregulated physiologically that is common and understandable and that we can think about ways to address those different experiences. I want to use the word symptoms here, but you know, I want to also be careful not to pathologize what is the experience, the phenomenon of grieving.

You know, I think many people who are listening, I’m sure you have read the Kubler-Ross sort of five stages of grief. And, you know, it’s interesting. I always I read the book and there were times when I felt like, wow, that really seems to fit in this particular scenario. And there’s other times when people did not seem to go through the stages or they didn’t go through the stages in order or they didn’t go through the stages at all. What what is the current research say about this? Is there is there a way of sort of thinking about these stages of grief and the progression of it?

It is, again, a dangerous line to go down because it can end up feeling like it’s prescriptive to say that on average, we see, you know, people have these different phases that they go through. The way that we think about it is that people can go through periods of time where some emotional state is more dominant than others. But that can come and go. These states can overlap and that there is no universal order or way that people grieve. And so we want a road map. We want to know that there’s, you know, an order to this. Can someone tell me the way this is going to look? Offering that, though, when it doesn’t like that, then leaves people in the shoulds. I should be going through this stage right now. I should be in this space. And where I think we see some of the biggest struggles for people is when they’re should-ing themselves around their grief, when they’re self assessing and saying, I should be feeling better by now, I should be able to do this. I shouldn’t be laughing right now. I shouldn’t be enjoying myself. This feels wrong. So when we have these popular ideas, like the five stages of grief, we also want to debunk the myth that there is this set path and that everybody grieves in some prescribed order. It’s just not the case.

The idea of someone dying in a way that seems senseless, you know, a tragedy that just seems senseless versus as I guess, you know, a more expected after an illness, for example, death. How much of a difference does that make in the in the longer run?

You know, it’s about how it makes sense to the individual. So I again, I work in in a cancer center. I work with people who often lose people after cancer. But how they experience that illness and what their thoughts were, their expectations, how they thought this was going to go, plays a difference. So it might not be sudden to the medical team, but it might be completely unexpected to the surviving griever. So I think that’s just an important thing to keep in mind. That said, the circumstances do play a role, how prepared someone feels for the loss, whether, you know, there were traumatic elements of of the loss experience and someone is having a traumatic stress reaction. Right. They’re traumatized. They’re re-experiencing what happened, whether because they witnessed it or imagining it. So circumstances absolutely play a role. But those circumstances, we have to understand it’s based on the perception of the griever.

You know, I have to tell you a quick, quick story. You know, when I was in college, a very close friend of mine, this woman, she was killed in a car accident. It was very it was very sad, very tragic. Several years later, she had this she had this love of birds. So her you know, we had all gotten together and essentially created this bird sanctuary in her memory. And we all went there to to basically open up this sanctuary. And her parents were there and her sisters. And it struck me at the time, Wendy, and this is, I don’t know, a few years after she had she had died that her her mom really had never gotten over this, so to speak. I’m not even sure if that’s the right way to frame it, but but she just she was so so it was so painful for her. It was so raw for her. And it just made me wonder, now that I’m a parent myself, does grief end? Does it ever end? Do we expect people to, quote unquote, get over a loss like that?

Absolutely not. Right. So that’s so important to to to get that message out that there is no expectation that grief ends because then it’s about the relationship. It’s about the love, the attachment, the connection, and that we don’t expect that to ever end that person matter. Their impact in your life mattered. And yes, of course, the impact of that loss is forever. A different way to think about it is to think about how you can find your way and learn to coexist with your grief. How do I coexist with my grief? How do I create a life that feels worth it enough and has enough of the ingredients that matter to me and that allows me to stay connected to this person? How do I continue to keep that relationship as mattering in my world? Coexist with the pain as it comes in the ways that it comes and find other elements of the world that make make it worth sticking around for. I mean, you know, this is about chasing life, right? This is about figuring out how do you connect with life again. When a person in your world who was life defining, who made life worth living isn’t physically here anymore. And that’s that’s the psychological task we’re up against.

When we experience loss, our lives changed forever. So how do we figure out how to live in this new reality? And what happens when you can’t find a way out of your grief? Doctors now have a name for that. It’s called Prolonged Grief Disorder.

It was just like a eureka moment. There was a light on and it’s like, wow, this is a conditions. I’m not crazy. And there are people like me and people go through this.

That’s after the break.

And now back to chasing life. Grief doesn’t end. We’re always going to miss our person. Nevertheless, with time for most people, things do get easier. But the passage of time may not always be enough. Sometimes grief can be so overwhelming it stops some people from functioning. They get stuck in this perpetual loop, experiencing the same intensity of yearning and loss as they did when they first learned of the death. It’s the worst kind of Groundhog Day.

And includes profound disabling levels of yearning, intense yearning, and it includes preoccupation, but intense and disabling levels of preoccupation. And then the other symptoms that could be considered include continued numbness, continued avoidance of reminders, loneliness, identity challenges, not feeling like you know who you are. Not not the same as I feel a little loss. I don’t really feel like myself. But someone is saying I don’t know who I am anymore.

That’s Wendy Lichtenthal again. Part of her research involves helping people who have debilitating grief that persists over long periods of time.

We’re talking about the people who say, I don’t know why I’m here. Life doesn’t seem worth it without this person physically here.

In the midst of the pandemic, alot of people may not know this, but but prolonged grief disorder was officially added as a as a new diagnosis to what is called the the DSM, the Diagnostic and Statistical Manual. This is sort of a listing of mental disorders for mental health professionals. Now, for a lot of people, this was new, but not for you. I mean, this is your area of study and professional work. Was this the right thing to to to refer to this now as a disorder? Given all that we’ve talked about. And if so, why? Why now? Why now make it official?

So I think there are a few layers of issues in this. Right. One is about the wording. Right. So disorder is a very loaded term and it’s loaded because of stigma of mental health. It’s loaded because it has implications for health disparities. It’s loaded in so many ways that we want to be really, really careful about. And then the prolonged part of that name is also a bit complicated because it has an implication of time. And we just got finished talking about the fact that grief doesn’t end. And in the DSM, it’s 12 months. That would be the duration where we would look to see if a diagnosis might be warranted. That someone saying are you saying if I’m grieving after 12 months, I have a disorder? Right. So that’s problematic. But that’s not the intention of the diagnosis. The idea with the diagnosis and what we’ve understood with ages of research and the timing of it is just because it eventually just happened. It’s been decades of kind of working toward finding a place for the subset of individuals who continue to be debilitated by their grief. And I think rather than thinking of it as prolonged grief, you know, maybe we could think of it as protracted debilitation after losing someone.

You’ve said that there is a subset of people. How common or I mean, how big do we think that subset is?

So estimates using these definitions are 7 to 10% of the population at large overall. The risk factors include how we attach sometimes individuals whose history of attachments were less secure. Those individuals may be at greater risk individuals who had a highly dependent relationship on the person they lost. It might imply emotional dependance. It might be practical dependance. People who have a history of other mental health challenges may be at greater risk. We know that people who are isolated could put someone at greater risk as well.

So what does it feel like to have this sort of grief overtake your life?

The prolonged grief is you’re on the train, you arrive at the platform, you’re ready to go, and then you’re derailed. So you’re just stuck. And you just need someone to get you back on the tracks and help you go on your way again. Because you just all and you just cannot see any which way of getting through it.

That’s Fiona Jones, a woman who was diagnosed with prolonged grief disorder. It all started in 2008. Fiona was on a vacation when her father unexpectedly died in his sleep.

He was 71. He was fit and healthy, as you know. There was no. So it was very, very unexpected. The whole world just stopped. And I just remember we were going back to the hotel. And I can just remember looking around, seeing everyone talking, laughing. I was thinking, why is the world just carrying on? You know, my dad’s gone.

11 years passed. And that level of grief that Fiona felt when she first heard about her father’s death did not subside.

I always cried every day. There wasn’t a day that I didn’t cry and I cry for a long time. And I got to a stage where we’d sit at the dinner table and I just really didn’t want to eat, but everyone was watching me and which is terrible because obviously they’re my kids and they’re still young. And I used to sort of say, Oh, I’ve just had lunch or I’ve eaten later and I used to make excuses because I just didn’t want to eat. My body and my mind were just completely crazy. And that was my existence. I, I couldn’t wait to go to bed. I’d be in bed during the day. I just couldn’t wait to go to sleep. And when I’m sleeping, I’m not being upset. I’m not thinking. That was my heaven. I used to go to bed in the early days just thinking if I die, I really, I really don’t care. But then I think I don’t want to die because obviously I’ve got my children, I need to be here for my children. So it was a really tough thing. Whereas before my dad had died, I used to be petrified of dying, but then I just thought, No, it’d just be comfort. I’ll just have peace.

Through the years, Fiona saw two different therapists, but nothing seemed to help. Then one day in 2019, she stumbled across a website for the Center for Prolonged Grief at Columbia University.

And it was just like a eureka moment. There was a light on and it’s like, Wow, this is a conditions. I’m not crazy. And there are people like me and people go through this.

With help from the center. Fiona found a therapist trained specifically to help people with prolonged grief. They met once a week for 16 weeks.

She’d give me tasks to do during the week and she’d do recordings. I mean she used to record me quite a lot. And I used to have to speak in the present tense about the moment I heard about how my dad had died. And then for that week, I used to have to listen to it once a day. You know, initially it used to kill me because all I could hear was myself crying the whole time. And it used to make me cry. And I used to dread listening to it. But in time, listening to it became a bit easier.

Fiona’s therapist asked her to keep a diary of her daily mood. She would rank how she felt on a scale of 1 to 10, one being good and happy, ten being terrible. At first she rated her days an eight or nine, but as they talked more, Fiona started to notice that some moments were okay, that some days were not as bad as she thought they were.

And so then my diary became more realistic. My numbers would be maybe four or five. And then I’d notice that, you know, we take my dog for a walk and for that split moment or the half an hour we were walking, actually, my moment was maybe two or three. And so that made me realize that when I said I’d been miserable for 11 years, I had had moments of nice times, like when my kids had their graduations, when we went on holiday. That maybe I hadn’t seen it as it actually was. I just assumed it was miserable, miserable, miserable. And obviously it wasn’t. I did have moments of good times and happy times.

Gradually, Fiona’s life started to feel normal again. She’s now considered recovered from prolonged grief disorder.

It took a while. It didn’t happen overnight. And also, I sort of didn’t really know who I was, really. I’d lost myself. And I still say I am still on that journey. As the days go on, I have more better days than bad days and my bad days are very, very few now.

Fiona has a message for people who might be experiencing something similar.

You know, we have such short lives, we don’t deserve to be so miserable for so long. And if we can avoid it or we can get help, then absolutely 100% go for it.

Grief is hard. It’s painful and it’s messy for all of us. And there’s nothing we can do to change that. But there are some tools that can be helpful as we learn to move forward. So I asked Wendy Lichtenthal if she had any tips to share. Tip number one. For those who are grieving. Don’t be hard on yourself. Give yourself permission to feel all the feelings. It’s okay.

Just saying like this is my process. This is part of how I am coping with it. Giving yourself that that grace and allowance is important.

Tip number two. Be open about how you’re feeling.

Finding outlets, finding ways to speak about your loss or to be with it is important for many people, whether it’s through a person or through journaling or through just your own conversation, to just be with your grief. Giving yourself that permission to grieve is really, really key.

Tip number three. For those who want to support a griever, there are different ways you can do so. And if you’re not sure how, ask them.

Do you want me to help you solve some problems right now? Or would it be better for me to just kind of sit here and listen and offer you support and show you I hear you right now? Sometimes we do need someone to solve a problem, and sometimes we just need to say it and have someone say, I’m so sorry. That stinks.

Tip number four. Don’t try to avoid the topic because it feels uncomfortable.

Give space to talk about the person who has died. Ask them about them. Talk about them. Or if you know them, your own memories of them, or the way that you think of them. Sharing that and bringing their presence again. Presence is the antidote to a sense of absence, right? So we want to bring in their presence.

And tip number five. Sometimes it’s enough just to be there as someone is grieving.

Don’t minimize what it is to be there, be present and to be in a space where you’re someone who is tolerating their pain, where they can freely express it because they know you’re not going anywhere. You’re not going to be like, Oh, this person’s annoying, so I’m going to not call them again. You’re someone who is unconditionally there. So when we can be that that unconditional presence and make it okay for someone to just be sad and just hold a space for that.

Look, I know this episode has been pretty heavy, so I do want to leave you with a little something uplifting. Sometimes it helps to take a moment and just breathe. Remember the grief doula, Sundari Malcom, from earlier in the episode? Well, I asked her to lead you through a short meditation, the same way she would with their clients.

So let’s begin. Your eyes can be closed if that’s what’s comfortable for you. Or you can simply find a space in your room to gaze at. And soften your gaze. Let’s just start first with the body. So notice your toes. And if you’re holding tension in your feet and relax. See if you can relax your ankles. Imagine that from the length of your ankle to your hip. It begins to soften in your chair so that you can feel your butt muscles relax. Can you feel your hands become a little bit softer? Notice if you’re holding tension in the arms and more specifically in your shoulders and decide to just let go for the moment. Can you relax the tongue in the mouth? And bring your awareness to that place between the eyebrows and see if there’s tension there. And then let’s just take three breaths in through the nose and out through the mouth. Releasing whatever we walked in here with, deciding that in this moment, in this breath, this is the only thing you have to do. And after the third exhale, returning the breath to the nose. And I want you to place one hand over your belly and one hand over your heart. See if you can feel your heart beat under one hand. And then see if you can feel the breath move under the other. A lot of times when we’re in the midst of grief, so much of our breath happens only in our chest. So can you bring it a little bit lower so that the belly moves on the inhale and the exhale. Take in just three more breaths this way. And then bringing both hands over the belly after the third exhale. Because sometimes when we practice breathing, when we’re in pain, when we practice breathing, when we are grieving, it can be really hard to keep the mind focused. So as you breathe in, say to yourself, mentally, just breathe. As you breathe out, just breathe. This is your only responsibility in this moment. There’s nothing else to do. Just breathe. Take in three more breaths this way. After the third exhale, let your hands rest in your lap. Remembering that you can always come back to these words when it becomes too noisy in the mind, you can always come back to this breath when the inhale is too high in the chest and you’re feeling a little untethered. You can do this. Namaste.

Thank you, Sundari. And we’ll be back next Tuesday. Thanks for listening.

Chasing Life is a production of CNN audio. Megan Marcus is our executive producer. Our podcast is produced by Emily Liu, Andrea Kane, Xavier Lopez, Isoke Samuel, Grace Walker and Allison Park. Tommy Bazarian is our engineer. And a special thanks to Ben Tinker, Amanda Seeley, Carolyn Sung and Nadia Kounang of CNN Health, as well as Rafeena Ahmad, Lindsey Abrams and Courtney Coupe from CNN Audio.