Grief as a disorder and the childless factor

In the US, a new disorder – prolonged grief disorder – has been included in the Diagnostic & Statistical Manual used by medical professionals to diagnose and treat mental disorders. They define it as being “incapacitated, pining and ruminating a year after a loss, and unable to return to previous activities.”

There has been a long debate over this – Loribeth covered this going back to 2012, and includes some interesting links in her post here where you can see some of the historical issues. It seemed particularly crazy, ten years ago, to look at diagnosing grief as a mental illness a mere two weeks after a loss. So they have taken time and research to do this now to “… allow clinicians to aid a part of the population that has, throughout history, withdrawn into isolation after terrible losses.” The NY Times article has received a lot of comment in the No Kidding community, and I took my time to read it and a lot of related articles, before commenting myself. I decided to share my analysis and thoughts today.

What they are addressing is what they will now call prolonged grief disorder. Elsewhere, it has been referred to as complicated grief. I’m not sure I like either definition, because even “normal” grief is complicated. Anyone who has grieved can vouch for that. But in that very name – complicated grief – they are also acknowledging how complicated this can be.

Names are so difficult to get right. In fact, I have a particular problem with the very first sentence of the article, which been the subject of a lot of commentary. It says:

“After more than a decade of argument, psychiatry’s most powerful body in the United States added a new disorder this week to its diagnostic manual: prolonged grief.

This is not my reading of the situation. They have added a disorder called “prolonged grief disorder.” The key word here is disorder, not simply “prolonged grief.”

This definition does not pathologize the “normal” grief that most of us experience. Normal grief is accepted as … well, normal. We grieve, in different ways and at different levels I am sure, but in due course we manage to come out of it and begin to find joy and enthusiasm for our lives. The grief may change us, and stay with us, but at manageable levels, and – as we all know – it may come and go, swell and ebb, at different times. It becomes a part of us, but does not define us or our lives. This is not the grief they are addressing with this categorisation. They’re not talking about acute grief either, that grief in the immediate period after losses – in our case it might be when we first know that we will never have children, or after a pregnancy loss. Acute grief is painful and terrible, and sadly, it is perfectly normal, as they acknowledge.

It is natural to worry about this. After all, maybe we think about our own grief, and reject the idea that it is or was a mental illness, when most likely our form of grief would not be included in this definition that requires help. But there are huge differences between normal or acute grief, and complicated, prolonged, grief, and I don’t think it diminishes our grief, or pathologizes it, by recognising a disorder at the extremes of grief. They are not the same, but one has the power to completely restrict and hinder our lives. I think that this is the level of difference they are describing.

By my interpretation, they are not pathologizing grief, or putting a time limit on it. A comment on the article points out that

“The twelve-month criteria states that the diagnosis of prolonged grief disorder (my edit) in adults CANNOT be made in LESS THAN twelve months, not that it MUST be made at twelve months.”

It does not mean that grief lasting longer than a year automatically becomes a disorder by definition of that time frame. Besides, there are other criteria to the definition, which I will touch on below. Of course, length of grieving varies for an individual. Two weeks or two months (still in the acute grief phase), or even two years of grieving, is very different from 10 years, or a lifetime. In my own experience, and in observing those in the loss and childless community over twenty years, most people seem to be able to fully embrace life after around two years (plus or minus a year or two), and can take joy in people or moments well before that. A woman grieving her child was quoted in the article,

“All of a sudden, you look up,” she said, “and a few years have gone by, and you’re back in the world.”

If I could not have reached this stage, if I had found myself still debilitated by grief five or ten years afterwards, I would hope that someone would diagnose me with a prolonged grief disorder, and then make an effort to help me.

So it isn’t only about the length of time grief lasts. The article notes that it also must take into account that a sufferer is “… incapacitated, pining and ruminating … , and unable to return to previous activities.”

I think that this is key, and it is what I see (and don’t see) in our community. There is a particular emphasis here on “pining and ruminating.” This is a natural form of grief, of course, in the early parts of suffering. But I have found that the only way to move on is to stop wishing for the impossible – wishing that the person or child we have lost, or the baby we lost or never had, is with us, when we know that cannot ever happen. This is acceptance, and includes missing them. We can miss them, and probably will miss them, for the rest of our days. We can even wish things might have been otherwise, but at the same time we can accept that they will not be. We can live with the “missing.” But pining and ruminating (perhaps what I call the more obsessive “what-ifs”) don’t serve us in any way, and may well incapacitate us, which brings me to the other key feature of determining what is PGD. Any grief that incapacitates us, that does not see any improvement, or even management, that isolates us, that consumes us, can in time become a problem – for the person, their lives and their relationships. That is when they need help getting through it.

There are also worries that grief as a disorder will be treated only with medication, or will be lumped in with depression when the two are actually very different, and studies are beginning to show they do not respond to the same treatments. If, by categorising a particular manifestation of grief as a disorder, there will be more studies, development of more treatments (and so far medical treatments appear to be less effective), and enable more people to pull out of their deep, disabling grief and take part in the world again, I am all for this. I choose to be optimistic, and hope that it helps people to get treatment. Especially as this is also related to the US health insurance system, which I don’t quite understand, but it seems it will enable more people to get help.

However, I do think there might be a difference here for the No Kidding. I wonder if that is why we, as a community, have had such a strong reaction to the suggestion that complicated grief is a mental health issue. Included in childless-not-by-choice grief is the issue of disenfranchised grief, a grief that has never been recognised. Many of those who suffer or have suffered it have rarely had anyone acknowledge our grief in the first place, or allowed us to express it and heal naturally. There were no funerals, no acknowledged anniversaries, no public showing of mourning to support us. So it feels as if this recognition of a prolonged grief disorder might once again disenfranchise our own grief, as it suggests that we should “forget about it” and/or “get over it” and move on without anyone ever acknowledging our grief in the first place, or the ongoing losses we feel. If we’re not allowed to recognise our grief, how can we begin to heal, or consider, or manage our grief?

What do you think?