persistent grief

Apparently, more than one million people per year, or 15% of the bereaved population, suffer from a disabling form of grief that persists long after the loss of a loved one.

How researchers can presume to distinguish a “normal” length of time for grieving from an abnormally long period of time, I’ll never know. But this prolonged form of grief, referred to as “complicated grief” (a rather unfortunate name), is under consideration for inclusion in a forthcoming DSM-V, the American Psychiatric Association’s handbook for diagnosing mental disorders.

Those baby lost mamas and papas out there might be surprised to hear that the length of time considered to be “prolonged” is more than six months.

The main symptom of “complicated grief” is “a yearning for the loved one so intense that it strips a person of other desires.” According to a recent New York Times article, for sufferers “[l]ife has no meaning; joy is out of bounds.”

There is controversy over whether this acute form of grief is actually distinct from normal grief or bereavement, major depression, or post-traumatic stress, and whether it should be classified as its own disorder.

Loribeth at The Road Less Travelled recently wrote about this article and some of the comments it received. She asks what others think.

I don’t buy the cognitive treatment the researchers suggest, which includes recalling the death or loss in detail and listening to the recording repeatedly. I understand the purported purpose, which is twofold — first in the powerful act of telling the story, and second, to illustrate that, like the tape, a person’s grief can be picked up or put down at will.

In other words, grief should not be debilitating after six months. A person grieving a lost loved one should be able to resume usual activities without feeling at all despondent, place their sorrow away in a neat tidy “box” and take it down only when no one is looking. After six months, it’s time to put it away, say the professionals.

I believe in the power of storytelling (hey, I’m a blogger, right?), and I realize that many people have nowhere to tell their stories. I am also familiar with the concept of the “box,” which is intended to provide a safe place to “hold” one’s grief so it doesn’t need to be carried all the time — a “container” so to speak. (I’ve even read about therapy for cancer patients that includes placing fears and anxieties in a “box” and giving it to someone else for safe keeping during treatment, so the patient can focus on healing instead.)

I think that might work for some but not all people.

Grieving is a lifelong process. A better approach for me has been finding ways to integrate my grief into my life, trying to discover how grief is responsible for some kind of personal transformation.

Most importantly, I certainly don’t want to be told (by anyone) what is the proper way to grieve. The more I think about it, the more appalled I am that someone would attempt to classify my personal grief as “normal” or not.

I realize this approach is intended to help those who are truly debilitated by persistent grief. I appreciate that the point is to provide professionals with tools (diagnostic and therapeutic) to be able to help people process grief so they might attempt to resume a functional life. But is this the right approach?

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~ by luna on October 3, 2009.

15 Responses to “persistent grief”

  1. Brilliant insights, as usual. Off to retweet…

  2. The way I understood the concept of the definition of abnormal grief is grief that is so debilitating that it seriously affects living. A lot of women contend with baby blues after a baby is born (or even adopted), but they define that as normal, because daily functioning still occurs. It is when those baby blues take over the life and become a deep dark depression that regular methods of releasing those blues don’t work. I don’t see it as a means of telling people how they should grieve, but maybe suggesting that when grief is so over whelming that it takes over a person’s life, it may be time for a little different approach to healing.
    JMHO of course!

    jody

  3. WHile I have never greived a life long partner, I do wonder sometimes if greiving a child is different. It is so connected to things beyond rationalisation and memory and deeply connected to your physiology (at least as a mother). It is a very difficult thing to understand cognitively.

    I also think it is important to recognise multiple griefs. Grieving a child while you have living children is different to grieving an only child. I am not at all taking away from the pain of losing any child, but with losing an only child you then lose your role as a parent (at least in any normal sense of that word), and you are no longer seen as a parent by others. Again, infertility also adds complexities in that a lot of people find some level of healing with the birth of a subsequent child, and people facing ongoing infertility after loss experience that grief as well as the greif of loss. You can hardly be expected to have “finished” that grief within 6 months when the uncertainty can go on for years.

    And then there are people who have multiple losses and therfor multiple greifs.

    On saying that, I did have a significant turning point at 6 months. A very definite decision to turn away from the past and face the present and the future. It was extremely painful to do that but also freeing. I also went back to work around that time and got involved in a few other things.

    I’ve also figured it takes me 8 – 12 weeks to greive a failed IVF cycle. I mean, it still brings anger and sadness and emptiness etc, but after that time period it is not all of me. For the first 8 – 12 weeks it is all of me. I can’t think of anything else.

    I always found it very offensive when people pathologised the way I was responding to things. I think it just sucks that you need to give someone a diagnosis in order to have anything to offer. I appreciate that my psychologist never did that. She just went with how I was on any given day and remembered that it was just how I was on that day. She expressed very clearly her belief in my capacity to make it through this which was the most empowering thing she could have done. Whereas diagnosing a pathology is very diempowering as it requires someone else to intervene and to “fix” you, rather than supporting your own healing – whatever road that takes.

    I also think the fact that 15% of people who grieve are percieved as abnormal is kinda crazy. Surely they represent part of the normal continuum?

    • So many excellent points, B. I think we re-live all of our unresolved losses with each new grief. And yes, the uncertainty of infertility adds a whole other layer of complexity to loss. And finally, I love your psychologist and couldn’t agree more.

  4. I don’t know. I’m extremely inclined to believe that a great treatment for helping you through baby loss is to tell your story, over and over. When I lost Gabe, I was sent to a counsellor who specialized in PTSD, and she was great, because she could put the loss, the experience of being rushed to the hospital, of having a baby then not, in PTSD terms, and help me work through that.

    And a huge part of what helped was telling the story so that I could tell the story, and not relive it, which is exactly what PTSD is, you are unable to remember the event without reliving it.

    I’m also not sure that the article said exactly that you should be “all done” in 6 months. I tend to think that it said that if after 6 months the grief was still as painful and acute and rehabilitating as it was when it first happened, you might need some assistance in coming to terms.

    And really, why aren’t we giving assistance to any parent who loses a child? Why do we make them go through hoops and find help. Shouldn’t it be automatic?

    • You raise some really good points, Mrs. Spit.

      I completely agree that telling your story is an integral part of healing. That’s how I found bulletin boards and blogs, it’s why I journaled and why I blog, and why I sought grief counseling after more than a year of grieving.

      The classification is intended to cover forms of grief that are still debilitating six months later. One of my issues is what is considered “normal” and “abnormal.”

      In my own experience, for instance, after a few weeks I was able to return to work and “act” like a functional human being, but inside I was crumbling, and yes, I was stripped of other desires and my ability to feel joy for FAR longer than six months. For me, nothing helped except time and space, telling my story, and forgiving myself for failing our son. My subsequent infertility only made matters worse.

      I realize others may require different forms of assistance, and to each his/her own. I completely agree that bereaved parents need all the help they can get — including compassion and understanding, and real therapeutic tools for healing.

      My concern has more to do with some of the issues raised in the comments re: over-medicalizing and pathologizing the problem (not even sure if those are words). On the other hand, maybe we do need a label to recognize there may be an issue that needs to be addressed.

  5. I did EMDR – which is rather bizarre, my therapist tapped on my knee while I relived a traumatic event over a few sessions – to gauge my level of reaction to the trauma. It took my months to realize that I had post traumatic stress disorder. And I did the box thing as well – which worked for a period of time.

    However, all this medicalization over grief – it makes me wonder if it’s just another way to sell pills to “fix” the “problem”.

  6. Great post. I don’t think there’s a “right” way to grieve, since we all do it so differently, and survive it and live with it so uniquely- just as uniquely as we experience our losses. I agree with you though, about incorporating it into life.

  7. I agree with you, Luna. I just keep thinking that if more people were willing to listen to the bereaved — and not judge or try to put labels on us — we’d be much better able to deal with our burdens.

  8. Good point Loribeth, which is why I am so grateful for the blogging community – you listened to me when no one else did – and get this – for free!

  9. I don’t like the idea of putting grief in a neat little box. It seems that only makes things comfortable for those around us who just aren’t up for dealing with it. If they were willing to just listen for a bit instead of trying to avoid it all for fear of upsetting the griever, it would help so much.

    Great post.

  10. Interesting discussion! I think that, as many of us know from personal experience, grief is cyclical, and something which requires a lifetime of continuing readjustments. I am, therefore, quite wary of anything which attempts to pathologise it. Any attempt to define a set amount of time one should grieve for seems in my mind to reflect how uncomfortable most of western society is with the idea of death or loss – generally we’re all encouraged to ‘move on’ and ‘get over it’, rather than processing it in any more meaningful way.

    …but, on the other hand, I do take on board jody’s suggestions that, in some cases, grief can be so overwhelming that the mourner can require some help in learning to live with the absence of their loved one.

  11. 6 months?! I probably hit my lowest point at 6 months – complicated by not being able to conceive again.

    Some interesting thoughts.

  12. I’m still grieving over a year later, and the past few weeks it’s worse than it has been at any time in the past six months. On the other hand, after 9/11, I cried every day for 6 months, and then gradually it eased up a bit. These things ebb and flow, and everyone is different. Each loss is also different. I think that a person who has had multiple griefs may be less resilient than someone who has one loss and then no more. Does that make them “sick”? I doubt it.

    I understand that by pathologizing incapacitating grief, perhaps someone who literally can’t get out of bed because of their grief may get the help they need, but it is stigmatizing for those of us who, for whatever reason, can’t (or don’t want to) “get over it” and “get on with our lives” as fast as folks around us would like us to. My life moved into high gear so quickly after my miscarriage that I just didn’t have a chance to get all the grief out (or perhaps there is so much that it will never all leave me), which is why I sometimes take an extra 10 minutes in bathroom in the morning just to get a good cry in. It’s the only time during my day when I can finish a thought. (My husband, on the other hand, recently claimed to have experienced the worst of his grieving on 2 days — the day we learned the baby’s heart stopped and the day I miscarried. Does that make him extra healthy? I think not.)

  13. I’ve been thinking about this a lot recently, about the recommendations we get on How to Grieve. I think therapy and talking about things is held up to be the big cure-all of modern times. It can help, however, every person has to determine how much of it is helpful and how much is simply painful. Thank for saying no-one should tell you how to grieve, I needed to hear that. I think the most important thing I’ve learnt about grief is that it comes, and goes, in cycles. It’s not a list of things I can go down and tick off and get stronger and less sad; sometimes the days are good and other times they just suck, but nothing lasts forever.

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