Welcome to IVF This, episode 153: IVF and Prolonged Grief

Hello, hello, hello my beautiful friends. I hope you are all doing so, so well. 

Yesterday, as in yesterday of writing this episode, we had the solar eclipse and Austin, where I live, was in the “Path of totality” which admittedly sounds very ominous to me and very “end of the world” BUT we had a once in a lifetime experience of getting to see the complete eclipse. So we layed out in our front yard and it was such a surreal experience bc for about 5’ish minutes it was pretty dark outside, the birds stopped chirping for several minutes, the outdoor lights came on. It was pretty amazing to get to witness. 

Today’s episode, I feel like I’ve wanted to talk about it for a while bc I hear from so many women about how they feel like so much of their personality and their lives have changed, sometimes dramatically, throughout their experience of infertility and IVF; so that’s what I want to talk about today and to give you some language that might help you better understand what might be happening and why. 

So, let’s talk about prolonged grief disorder. If you've never heard of prolonged grief disorder you're not alone, many people haven't. And there's some controversy surrounding the term and the diagnosis. That I will touch one. What I want to make abundantly clear as we start to talk about this is that I am not diagnosing anyone, not am I suggesting that you need to go get evaluated by a psychiatrist if this topic resonates. The purpose of this episode, and actually all the episodes, is to help give context and language to what you might be experiencing, so that it doesn’t have to feel so overwhelming or isolating, or frankly like there is something wrong with you.  So it’s not so much about identifying a possible disorder, but to understand that grief can stay with you and it can be complicated- as it often is. 

So I just want to give you the basic information and my hope is that if this term is new to you and even if it isn't frankly, that you will come away from this podcast using the idea of prolonged grief disorder in the most constructive and loving way possible. And I’ll tell you a little bit more about what I mean as we go but let’s talk about what it is, how it came to be, the basics. 

So prolonged grief disorder is the new name for what used to be called complicated grief in the last version of the DSM, version 5. The DSM if that is not a term you have ever heard, is the Diagnostic and Statistical Manual of Mental Disorders. It’s kind of a mouthful, isn't it? Basically it's the diagnostic book, the big book that clinicians and psychiatrists use to diagnose mental disorders. Now, I am not someone who uses this book, anymore. I am no longer in the business of diagnosing anything but it important to understand that having a diagnosis is essential for insurance coding purposes, in addition to the human need to classify things. 

So I understand why this book exists, But the DSM is the big book revised, with lots of opinions. To get something in a DSM revision is a big deal, meaning that it requires a lot of people, committees, public commentary in the field. It’s kind of a big deal. So the latest version of the DSM, the DSM 5 has been in work since 2013; and then in 2022 there was a text revision that included some updated criteria and codes. And the version before was published in 1994 and then a text revision was done in 2000- so as you can tell by the massive gaps in time, the DSM is not updated often, and as you can imagine, any updates require a lot of hands in the pie. Like A LOT. Committees, conferences, disagreements, compromises, so many opinions- and that is to say, this book is FAR from perfect. So I want you to bear that in mind as I talk about Prolonged Grief Disorder. 

So what is it? It used to be called in the last revision, complicated grief disorder. Now, I kind of like that term a little bit better; but for some reason, I wasn’t called up to provide an opinion in the years leading up to the DSM 5 publication, which I find outrageous! Now, I will remind you, the definition of grief that I use is that grief is the natural human response to a perceived loss. Grief is not a disorder. Grief is a natural human response to a perceived loss. We were built to grieve. We are supposed to grieve. 

Grief is a normal part of being human. So that's important to understand. And sometimes though what happens as with anything is that it doesn't always go in the best possible way. Sometimes things interfere with healing. And the example from Author Mary Frances O'Connor uses, which I really like is the example of a broken bone. 

So if you break a bone, your body knows what to do with the broken bone. Your body knows to heal a broken bone but sometimes even if you get that bone set and you get it casted, sometimes something goes awry, there is an infection or something happens. And some assistance can help get that healing back on track. And I love this idea that it can just get complicated. And essentially that’s what complicated grief is. For most of us and I am really generalizing here, we have an early acute experience of grief where it feels like our world fell apart and everything feels chaotic in our minds; for some of us it’s like a slow build to that chaotic feeling. Some of us have very intense brain fog and we can’t think or we’re numb, or we have really abrupt mood swings. We go through that period of knowing intellectually that it happened, or it’s happening, but not really understanding that it did or may still continue to happen. I’m thinking of things like pregnancy or child loss, cycle or transfer failures- those are like sudden shocks that can make it really hard to function- you’re literally in shock. And if you’ve been on the journey for a while with nothing, and that gradual build of shock, numbness, fog, etc starts to creep in. Both experiences or a combination of them, are completely valid. 

For most people, 90 ish percent, they adjust, they adapt to grief, they integrate it into their lives. I talked about this in episode 150- IVF and Time Doesn’t Heal. They don't stop grieving in that the grief will always be a part of life because the loss always happened and they’re always going to have thoughts and feelings about that loss- and remember the loss can mean anything that you feel is a loss, including the loss of how you expected your family building journey to look like.  And sometimes especially around loss anniversaries or particularly meaningful days or holidays, they’re going to feel more emotion around that loss than at other times. But for the most part, they get back to living. And grief is no longer interfering on a daily basis because it gets integrated into life. 

Well, the idea of complicated grief, now called prolonged grief disorder, is that for some people a year or more has passed for adults, and they aren't able to live life without significant disruption. Here’s some symptoms of prolonged grief disorder according to the APA’s website. Identity disruption such as a feeling as though part of oneself has died. 

Marked sense of disbelief about the death or event. avoidance of reminders,Intense emotional pain such as anger, bitterness, sorrow related to the loss. Difficulty with reintegration such as problems engaging with friends, pursuing interests, planning for the future. Emotional numbness, absence or marked reduction of emotional experience. Feeling that life is meaningless or intense loneliness, feeling alone or detached from others. In addition, the person's bereavement might last longer than might be expected based on social, cultural or religious norms. 

Now, how do we use that information? Here is my hope. My hope is that if you relate to that you will hear that and you will go, “Oh, okay.” And you will be compassionate with yourself and you will seek support and you will not shame yourself or blame yourself. And you might feel a sense of relief knowing that there is a name for what you might be experiencing. Now, how I hope you won't use this information is that, and you probably won't because you’re listening to this podcast. And if you’re listening to this podcast you probably have had a grief experience and it might be other people that tend to use this against you. We don't want to take this and make it mean that grief in and of itself is a disorder. We want to take this information and say, “Okay, grief is very human and natural and normal and these are the kinds of things that happen in grief and it’s different for every person and there’s no end point and there's no goal. And I’m not broken because I am thinking and feeling this way. 

And I also don't have to live a life where my grief significantly impacts my quality of living. And if it is, then support is available.” 

That's what I really want you to hear. But you can imagine that those of us who have been saying, “Grief is not a disorder, grief is natural, grief is normal, stop making it wrong. Stop telling us to get over it. Stop telling us to move on. That's not how grief works. There is no endpoint.” If you’ve listened to the podcast, that’s the kind of thing you hear me say all the time. 

You can imagine we’re a little conflicted around this idea of prolonged grief disorder because we can see how people misuse pathologizing but with anything it's not black or white in my opinion. It’s nuanced. There’s some value in this diagnosis. There’s a way to use it for good. And there’s also a way that we can use it against people who are grieving or we can use it against ourselves. And so let’s live in the gray. Let’s live in the gray area. 

Now, I have read different numbers but it seems to be that on average people can agree that it’s somewhere between 7-10% of adults will experience symptoms of prolonged grief disorder, somewhere around there. But I have read four. I have read five. I have read 10. I have read 12. I have read lots of different numbers. So I don’t think the numbers really matter. Most people do not struggle with prolonged grief disorder, the majority of people don’t but some people do. But that’s people that would fall within the diagnostic criteria. That doesn’t mean that someone can’t experience elements or traits- in mental health we would call this “sub-clinical,” meaning you’re experiencing symptoms but you don’t check all the boxes for an official diagnosis. 

If you want to learn more my suggestion is you go to prolongedgrief.columbia.edu. And we’ll link in the show notes. And that is the Prolonged Grief Center. It used to be called the Complicated Grief Center or Center for Complicated Grief, which Dr. Kathy Shear is behind and her work is fantastic. I love her website for you because there is a section on it for both professionals and for the public. So if you want to learn more I highly recommend that you go to that website and you click on the for the public section. 

But what I love about this website is a couple of things. One is that when you click on the for the public section you will see a quiz that you can take, a self-assessment tool, brief grief questionnaire, very easy. You can take it and in literally just a couple of minutes you will know if you might be experiencing prolonged grief. 

Another reason I love this is because not all mental health professionals have the same education as it relates to grief. And Dr. Shear has developed a very specific protocol for prolonged grief disorder treatment. And she has trained mental health professionals in her work at various levels. 

But if you go to this website and you click on Find a Therapist and you're looking for a therapist who understands prolonged grief disorder you can sort, you can search by location. You can tell the level of education that they have received as it relates to work they have done with the center. And that’s so empowering for you. The last thing you want is to show up in someone's office, if you want a good licensed mental health professional who doesn't understand grief, who doesn't even know the term ‘prolonged grief disorder’. 

So I like this for you as someone who can use this tool, find what they need. And there’s just a lot more information in there too that can help you gently, help you help others in your life understand a little more about what you might be going through if this describes your experience, so that they can better support you And I love that website for that reason. 

So that’s what I wanted you to hear. We’re going to use this term for good and not evil. Grief is not a disorder. Grief is just the natural human response to loss but at a certain point if it is persistently interfering with the quality of your life we don’t have to settle for that. We don’t have to make ourselves feel bad about it. We just have to know that that is not what's possible in grief. 

Alright, that is what I have for you this week. Have a beautiful week and I’ll talk to you soon.