Offending the bereaved: Thoughts on the controversy around the upcoming DSM V proposed “grief guidelines”

Michael Max Dorf, a month or so before.

Who would have ever thought there could be a controversy around grief?

In the last few months, in my other (non-writing) life as a therapist, I have heard the devastating stories of several people seriously traumatized by their past contacts with the mental health system, people with a lasting legacy of pain from being (probably wrongly) prescribed powerful psychiatric drugs or placed against their will on a terrifying psych ward. I’m definitely not a conspiracy theorist, one who says things like “everything happens for a reason,” or assigns existential “meaning” to every happening, and so I’m sure it’s pure coincidence that I’ve heard so many stories like this lately. I obviously recognize that many dedicated people in the field are doing work that manages to be both life-saving and compassionate, yet these awful stories also underscore the need for folks setting the parameters in the field–the task force considering changes in the upcoming edition of the “bible” for clinicians, the Diagnostic and Statistical Manual (so-called “DSM V) to the various “diagnoses” around grief–to at least try to get it right.  It seems to me that those of us working in the field who are honored every day to do this work, to witness people’s deepest pain, have a duty to at least speak out when it appears that a grave and possibly for some folks dangerous injustice is being contemplated.

Partly because of the experience I mention above, and partly as a response to a wonderful “Open Letter to to the DSM Task Force” posted by Dr. Joanne Cacciatore on her own website (which I’m linking to here) , I’d like to add my own voice to all those professionals and offended bereaved people weighing in on this disturbing and upsetting controversy.

As readers of this blog surely know, I too lost lost a child, my son, Michael, who died in 1994, and I’ve been living with, and thinking, studying, and writing about grief ever since. (Let me assure the reader that I’ve also done lots of other things, including recover my sense of humor.)  My writing inspired by this includes a highly acclaimed novel, “Saving Elijah,”  published by Putnam in June, 2000.  After that I (eventually) went back to grad school to get a second masters degree in social work, mostly in order to work with the bereaved, even though I already knew from experience what one bereaved human being needs from another human being.  More recently I’ve been working on a kind of memoir, which I’m calling, “Excerpts: Complicated Grief.”  Included in the memoir is a recounting of the day I first heard in grad school that we were to label grief that lasts longer than two months (now according to all accounts of the upcoming DSM V apparently further reduced to two weeks) as pathology, call it “complicated,” call it a “disorder.”  Even twelve years after my son’s death, this felt like an accusation.  How could it not?  How could they not see that this is damaging to the very people it purports to “help?” It was as if feeling the terrible sorrow I had felt, sometimes even still felt (still sometimes feel now), wasn’t “normal.” Yet I knew full well that it was “normal,” both from my own experience and from talking to scores, even hundreds of other bereaved parents.

I’ve written the memoir in the second person, and it moves backward from the present to the day of the loss, in an attempt to show how grief can (while still being “normal”) reverberate throughout every corridor of a life, sometimes louder, sometimes softer, sometimes as a source of wisdom, sometimes as source of pain or anxiety, but always present.

It opens on what would have been my son’s 21st birthday.

October 22, 2011, seventeen years after. Stand at the dryer, slap in wet clothes, try to form an image of a strapping young man turning twenty-one today.  See only a sturdy toddler.   Like a failed magic trick.

Go to the cemetery, brush away leaves, place stones on the brass and marble marker. Stand in the thick, humid air.  Say Kaddish,  forget the last part.  Try to remember Michael but conjure up only bones in a tomb, shreds of boy and turtle, earthworms, fecund soil.  Say the word fecund aloud, the hard k sound rattling the teeth. Remember your husband falling into the grave. Wonder why you  come.  Get back into your car pursing your lips as if tasting something moldy. Think of old metaphors, new similes. Grief always comes alone to a child’s grave. Grief is no longer a thundering, hissing monster.  Grief is hollow now, like the blunt thud of rock on stone…….

The core problem comes in my view from the pathologizing of the normal human emotion of grief by calling it any kind of a disorder. And so whether you call it an “adjustment disorder related to bereavement,” and give it one year before you dial it up into an even more serious “disorder,” or whether it becomes “major depressive disorder” at two months, or at two weeks, seems to me secondary to the fact that it is called a disorder in the first place.

A child’s death?   At two weeks you’re still in shock. You’re just getting started at two months. Maybe. Actually, it seems to me that it would actually be “abnormal” for a parent who lost a child to not feel overwhelmed and debilitated by sorrow (and to experience many of the attendant symptoms that echo but are not the same as those for depression) at two months out, let alone two weeks out. I would venture to say this is probably true even at one year.  I remember visiting a friend of my mother’s who at age 100 was still talking about her fifteen-year-old son’s death in a car accident fifty years before as if it had happened that day. Personally, I would still call hers “normal” grief. And so the learned people figuring out the DSM seem to have had it backwards all along, and now seem to be doubling down on having it backwards.

I certainly agree that what people who have suffered loss need is (as Dr. Joanne says), human connection, caring, and compassion, or as the Lancet said: Time, Compassion, Remembrance, Empathy.  I believe it’s an insult to think that a pill could be any kind of substitute for that. I remember a good, well meaning friend wanted me to take medication, but even though I was suffering mightily, walking around in my bathrobe (not only figuratively) for three years, I somehow knew that it would do no good at all to try and mask the symptoms, because a certain amount of tears needed to be shed.  Luckily no clinician suggested medication.  I’m not sure what I would have done, given my state of mind, if one had.  The idea that we can “medicate” away the pain of grief isn’t about the bereaved, it’s about those who are uncomfortable with being witness to pain. As Rumi says,

We are pain and what cures pain, both. We are the sweet cold water and the jar that pours. I want to hold you close like a lute, so that we can cry out with loving. Would you rather throw stones at a mirror? I am your mirror and here are the stones.

In other words, the healing from the pain is in the pain.  So it is.

My favorite definition of compassion is the Buddhist one: “Willingness to be close to suffering.”  That’s what I do, what all of us who want to help do, we open our hearts to someone’s suffering.  We witness.  We don’t try to fix it.   I always say: Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen

It seems to me that this isn’t only about the pharmaceutical industry, it’s even more about the insurance industry, which seems to be in the business of not paying for whatever it can possibly get out of. (And not just in the area of grief.)  In this case the insurance industry seems to want to get out of any paying for anything other than that which has medication as the first line of treatment, and which labels grief a “mental illness,” or a “disorder” of some kind (an outcome that can stay in a person’s record forever, with terrible, terrible consequences).

It’s a sickening conundrum, it puts people who want to provide support for the bereaved who seek it in a terrible position, and of course it puts the bereaved in an even worse position.  Aren’t we trying to help them?  Surely we are. And one of the things we must do to help them is “normalize” what they’re feeling.  Yes, I wailed at the top of my lungs in a hospital room, but so would you.

As clinicians, we have the “V” bereavement code, but insurance generally doesn’t pay for treatment if you use this as a diagnosis. To receive payment from insurance, it has to be a “disorder.” And so to get insurance to cover our effort to help people make their way through grief, we are actually forced to call it some kind of disorder, even when we know it isn’t.  (This is, by the way, actually true for many situations, for example anger management.  Insurance won’t pay for people looking for help with “anger issues” unless you slap on a some kind of a “disorder” label.

Some, no doubt, will think I’m a hopeless idealist, or a radical left winger for believing that Americans, the “richest” country on earth, ought to provide universal health care that enables people to get the health care they need, no matter what their financial or job situation.  I don’t care.  I still must speak the truth as I see it.  And there simply ought to not only be health care for all, there should be some other terminology that acknowledges the debilitating nature of what I’ve called “big time grief,” and also provides coverage for people to get the proper, compassionate psychological support they need in difficult times.

All of us can be hopeful that the outcry from the grief community around this issue will, like the outcry to de-pathologize homosexuality in the 1970s, result in a de-pathologization of grief.  From a practical standpoint, under our current disaster of a health insurance system, we are required to diagnose some kind of “disorder” or there is no insurance coverage for clinical services.  In the absence of a complete rethinking of the whole system (oh, for such an outcome!; let’s just hope the misguided politicians won’t succeed in their threat to repeal the so-called “Obamacare” coverage for everyone), we can only hope that whatever happens, good clinicians (and particularly psychiatrists with their ready-meds) recognize that the DSM is at best an imperfect guide, and can tell the difference between grief and either adjustment “disorder,” or major depressive “disorder,” whatever must be recorded as a diagnosis to get coverage.

I invite you to share your grief story as a comment.

11 thoughts on “Offending the bereaved: Thoughts on the controversy around the upcoming DSM V proposed “grief guidelines”

  1. It’s taken years of therapy for me to find out that my father’s death when I was 12 resulted in chronic depression that’s lasted forever. I agree wholeheartedly that grief shouldn’t be considered a disorder, but frankly, if they want to call it that in order to let me get help, I’ll take it. My 91 year-old mother is very ill right now, and I anticipate more grief to come. I’ll be needing help, no matter what. And why do people find it so hard to “Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen”? Sometimes I wish there were a formal way to grieve. But since we’re not allowed to acknowledge death, how can we acknowledge grieving?

    • My wife died suddenly on 12/26/99. Her death came after 14 years of marriage. We both had more than one previous marriage, but neither had lost a spouse to death. Our marriage had begun on a rocky road that became smoother with time. We had gone through many tribulations together, and had emerged as a strongly committed couple. I was 62 when she died and knew nothing of the grieving process. At my sister’s suggestion I attended a 6 week workshop sponsored by a church. At first I seemed to be following the five stages, but when I got into the anger stage my response to that anger was to make a subconscious decision that life was dear and growing shorter, and damned if I was going to be miserable for two years. I had come through 14 years of losses of life savings, career, income potential, all because of uncontrollable external events, and I did not intend to spend the next two years wallowing in grief regardless of my then present sense of loss of my wife. I went to a program called Discovery in Dallas, and in two months I lifted myself out of my paralyzing grief. By August 2000 I had met a new love, a widow, and we have now been blissfully married since January 2005. I am living proof that no matter how paralyzing grief is, it can be overcome in less than a year. Had I blindly accepted the pronouncement I had been given in the grief workshop I would have wasted God only knows how much of my remaining life wallowing in misery.

  2. Thanks for writing, Gabi. You are right. We mostly avoid talking or even thinking about death and grief and loss in this culture, even though all three accompany each and every person on the life journey. I think by acknowledging it in writing (even if the writing is only blips and bits) you take us one step further toward making it a part of what is acceptable to talk about. Some of the formal rituals–for example–the Shiva in the Jewish tradition, the wake in the Catholic–can be helpful for some, but they end and grief can go on, and people stop calling, and, as you seem to be pointing out, so often say the wrong thing anyway, even though they’re usually well meaning.. Yes, indeed. Childhood grief can become chronic depression and last a lifetime. I’m glad you have recognized depression and you’re getting the help you need, and as I said at the end of the blog, no matter what happens, we hope clinicians recognize the difference between grief and depression, as maybe yours have. Thanks for much for sharing. Write again.

    • Thanks for writing, Roda. I’m so glad you found a grief program that helped you, and you made a new life for yourself after grief. I think the beginning of moving ahead with your life is telling yourself you’re going to do so.

  3. The untimely loss of a young life leaves a hole that can never be filled–memories of a life that ended far too soon. I know, because I have experienced both the loss of a brother and the loss of a son. We still grieve for them.

    My younger and only brother, Billy, died in a car wreck in 1972 when he was almost fifteen. I was sixteen. It has been forty years now and we still grieve for him and wonder who he would have become, who he would have married.

    My wonderful son, Jason, was diagnosed with a rare childhood cancer just after his 18th birthday. The doctors offered nothing to give us hope, yet Jason endured 18 months of torturous cancer treatment before his death on his father’s 50th birthday seven years ago. We watched him die for 18 months–just watched. We could do nothing to stop it. There was no where to go for help. Our grief over his loss is always with us. There isn’t a day that goes by, not even an hour or a minute that we don’t remember him and wish he were here. Just hearing a song he liked is enough — and the tears are flowing again and sometimes I still cry myself to sleep at night.

    He has three siblings. His death hurt them all. His closest brother (22 months younger) tried to escape his grief by using illegal drugs and was arrested three times, which was also devastating to our family. I find it sad that our daughter, who was ten when he died, doesn’t remember much about him.

    We expect our parents to die before us, hopefully at a ripe old age. There are names for others who have lost loved ones–widower, widow. What do you can a parent who has lost a child? All our hopes and dreams for our child will never come true and there is no remedy.

    • Thank you, Pam, for sharing your story. Oh my goodness, you have suffered such terrible losses, your brother, Billy, and then your son, Jason. To watch a child suffer is just unspeakable. I’m so very sorry. Yes, you are right, losing a child disrupts the natural order of life.

  4. Why is it that we who lost someone special (I lost my only child, Sebastian 16yrs, nearly 3 yrs ago to cancer) have to learn to deal with out grief? How come others are not told to have to learn to deal with our grief? Masking the pain with medication and calling this grief a disorder is beyond comprehension. Our society can no longer deal with intimacy in its truest meaning.

    • Thanks so much for writing, Trish, and for sharing your story. I’m so sorry that you lost your beloved child, Sebastian. And of course you’re right. The pervasive effort in this culture to shrink-wrap and package emotions, along with the medicalization of the natural process of grief, has the effect of decreasing intimacy. It also promotes the misguided idea that those who suffer are “other.” You’re right, too, of course that most people don’t have a clue how to deal with other people’s grief. Some people are naturally gifted in this regard and know instinctively how to “be with”; others need to be taught. Maybe these skills ought to be taught, along with basic coping skills.

  5. In 2005, I lost my dog Ariel to liver disease. Some may dismiss the loss of a dog compared to loss of human life, but Ariel stood by my side when all humanity had abandoned me because I was in and out of psych wards and unemployable. Her happy bark and little kisses were what brought me back to life, not ECT or doses of SSRI’s. Sorry, pharmaceutical industry, but you’ve been trumped by a little white dog. When I lost her, it was like something had been taken out of me, like there was a hole somewhere in my body. I forced myself into sleep by using medications and went through my grief unaided. Many years later, my wife gave me a small white toy dog as a remembrance. I felt the flood gates open again and I wept openly for the little dog whose loyalty and love brought me through those dark times. To say that grief can only last for a certain time is nothing short of an abomination – it is turning human emotion into something soulless and mechanical and reducing us all to the level of automatons. How in the name of God do the authors of the DSM-V have the audacity to dictate to hundreds of millions of human beings in as many different societies and circumstances, how long and in what manner they should express grief? What arrogance or indifference would lead someone who is charged with that most delicate and fragile an object, the human soul, to declare that grief fits some sort of template and that any deviance marks an illness rather than an expression of humanity? If this becomes the standard (I am not a therapist so I don’t know the current status of the DSM-V), then God help us all, for we have traded a most precious part of our souls and humanity for corporate profits.

    • Thanks for writing, Steve. I didn’t delete your comment, I just didn’t approve it so it never showed up. Here it is. I admit, as someone who lost a child, the comparison to grief over a dog feels diminishing of what I and other parents who’ve lost children have gone through. However, as a therapist (and former dog owner), I understand that dogs for some people become like family, and if your dog was your help and companion no wonder you grieve for her. I also wish to caution you as to the nuances here: psychotropic medications can be life savers for many people and my point is that good psychiatrists, psychotherapists and psychologists should do the right thing for the bereaved, should understand that some grief lasts a very long time, no matter what the DSM-V says, and must tailor their treatment to each individual, while also taking into consideration the DSM-V moderated limits of what insurance companies will pay for.

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