The Disorder of Prolonged Grief – Does It Make Sense?

For those of you who are grieving, I’m sure you’ve heard about the newest update from the American Psychiatric Association (APA). It’s news that maybe made you feel relieved…or maybe made you furious.

Grief, it seems, is now a disorder.

Okay, fine, it’s not always identified as a disorder. But last week, as the New York Times reported, the APA added “prolonged grief” to its diagnostic manual.

I decided to take a look at what this meant, so I went to the APA directly. Prolonged grief, as they define it, happens when a person experiences “intense longings for the deceased or preoccupation with thoughts of the deceased” a year after the loss occurs (of 6 months for kids.)

There’s a lot more to their discussion, but the timeline really struck me. A year? That’s it? Gosh, I hope the APA wasn’t reading my blog in the second year, because they would have put the “prolonged grief” label onto almost every single one of my posts that spring!

So I dug into it even more. The APA specifically notes that a person would get the prolonged grief disorder diagnosis when “the duration of the person’s bereavement exceeds expected social, cultural or religious norms and the symptoms are not better explained by another mental disorder.” Well, I thought, I’m certain most Americans don’t expect for a widow to grieve for over a year!

I was fascinated by what I was reading. I found that the APA has a list of the ways in which “prolonged grief” might show up (I’m excerpting from their website here) and as I looked at it, I thought, I bet I have blog posts from my second year of widowhood for all of them.

I was right. In fact, I have many. But for simplicity’s sake, here’s one post from 2019 (my second year of widowhood) for each of their bullet points. What does it mean to be experiencing prolonged grief? A list of some of the symptoms they identify, and my related posts:

• Identity disruption (e.g., feeling as though part of oneself has died). Don’t lots of grieving people feel like this, at least a little bit? As I wrote in Freak Out Letter #6, “In my worst moments, I sometimes wish that I had met someone else and built a different life that didn’t end up so broken.” I had a lot of moments, especially in the spring of 2019 when I felt completely broken, and didn’t know who I was anymore.
• Marked sense of disbelief about the death. I mean, I intellectually accepted that Shawn was dead. And yet, it seemed impossible, especially because he came to me so much in my dreams. As time went on, I wrote a bit about those dreams. In Last Night, I reflected, “But he was there in my dream last night. So real, it felt like I was actually touching him. So real that even hours later when I typed this sitting at my school desk, I couldn’t stop the tears. So real.”
• Avoidance of reminders that the person is dead. Okay, this is one that I didn’t write about, because I was and am the sort of person who doesn’t do a lot of avoidance. But I know there are many people who feel this way, even after a year.
• Intense emotional pain (e.g., anger, bitterness, sorrow) related to the death. Yes, some of my grief got easier over the first year. But not all of it. I’m not sure if it fully comes through in this post, but I was heartbroken writing at Shawn’s grave when I composed Reflections at Your Grave on Easter Weekend, “It’s strange, to think of how I once went to Costco to buy food for you, for us, for our lives. Now I still go, because of course I still go, but I don’t buy food for you. Instead, I come to your grave beforehand and listen to the rustle of the trees and think about all that you are missing.”
• Difficulty with reintegration (e.g., problems engaging with friends, pursuing interests, planning for the future). I tried reintegration. I did. I really wanted to see a bright future, and I thought maybe dating was the way to do that. But I crashed a burned hard at my first real attempt, likely because I wasn’t able to fully engage not just in a romantic relationship, but in many of my relationships. In Happiness Is For Other People, a post about a breakup a year and a half after Shawn died, I wrote, “But you don’t get happiness, at least not right now. Because happiness is for other people.”
• Emotional numbness. In my second year of widowhood, I tried out the idea of “radical acceptance” as I understood it. I was so unhappy that I was trying anything. My mindset was pretty bleak, but somehow “radical acceptance” helped me move through the days with a bit of detachment. In You Are Alone. Accept That. Carry On. I wrote, “I took out a post-it note one morning. On it I wrote 3 lines: You are alone. Accept that. Carry on…All I could see – especially in the middle of the night – was a sad future where I was totally alone in the world.”
• Feeling that life is meaningless. Oh boy. This is a hard one to reflect on. I didn’t ever feel this totally because I had my children, but I felt parts of it. In I Am Doing Today, I copied a note I sent my two friends Kelly and Paige, “I’m not doing well. Low point here. Nothing to be done, really, but I wanted someone to know. It’s turning 40, I guess, but it’s also knowing that no matter how much I am trying to make my situation palatable, it still sucks. I may write something really good and raise these three awesome kids, but no one will ever adore me like Shawn. I hate my life.”
• Intense loneliness (i.e., feeling alone or detached from others). Oh, this one was an intense emotion I experienced around month 15. I wrote about it in Backsliding Into Grief: “I don’t know how to fully put this down on paper, but at that moment I felt just as sad as I had in the weeks immediately after Shawn died. Yes, it’s been over a year. But somehow, I’ve been backsliding with my emotions. In fact, I’ve felt more grief-filled lately than I’ve felt in months. Even now, as I’m writing this post, I am not totally sure why I’ve spiraled so badly in the past few weeks. But what I do know is this: I feel like I’ve been re-living my loss every day lately. I wake up every morning and cry (something I haven’t done in months) and everything throughout the day can set me off.”

Woah. That last post is one that’s so filled with grief it’s still hard for me to read three years after I wrote it. I was deeply miserable – and likely experiencing at least a bit of prolonged grief.

But who knows – maybe a psychiatrist would have said that I was fine, feeling something normal that was just ebbing and flowing as emotions can. (In fact, my therapist at the time mostly said that to me.) I still got out of bed every day. I still went to work. I still fed my kids and got them new soccer cleats.

What’s amazing to me is that I *could* have been diagnosed with prolonged grief, if these guidelines had existed back then. And I don’t think my story is that unusual at all.

Terrible grief – even the kind described above – is an emotion that I definitely felt after the 1-year mark. I’d lost my husband. I know a lot of other widows who had similar experiences to me. In fact, most of them did.

I get that part of the reason the APA wants to designate prolonged grief as a disorder is that it allows people to access care. I won’t get into all the problems with the American health care system, but that seems like a good aspect of this new designation. And I also get that some people really cannot function for a very long time after grief, and that specialized care is definitely needed in those cases. I’m glad the diagnosis exists for people who will benefit from it.

But the idea that terrible grief should only last a year? That feels…upsetting. Because what I felt back then, for many months during my second year of widowhood? It was grief that was disruptive and unsettling and really, really hard.

Still, what I experienced doesn’t seem so strange to me. It felt awful, of course. But it felt normal, too.

I loved Shawn so much.

And so I grieved him so much, too.