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Grief: The Proposed DSM-5 Gets It Wrong

March 28, 2012

By Karen Roush, MS, RN, FNP-C, AJN clinical managing editor

Photo taken by author at a church in Switzerland

Today is my son’s birthday. I remember so clearly the day of his birth, the overwhelming sense of recognition the first time I saw him, as if I had known him forever.

April 16th is the anniversary of his death. When a birth is so closely followed by a death, they are forever intertwined. I remember watching him sleep, how he turned to the music when I turned the key of his music box and “It’s a Small World” unwound its notes against the side of his warming bed. I remember his three-year-old brother holding him, sitting in the rocking chair in their father’s lap. I remember rocking in that chair three weeks later, holding him against my chest as his few last breaths faded. I remember the long walk back down the hall, the drive home, the blur of a funeral. And then the first long cold winter, visiting his grave day after day, distraught that my baby lay in frozen earth, unprotected from the cold. And the months that stretched on into a future I sometimes couldn’t bear to think about, because I couldn’t imagine my way out of the pain of grief into a day when I would feel joy again.

I was grieving. I listened for the phone, certain the hospital would call any minute to tell me it was all a mistake. I couldn’t eat and lost weight. I cried, sometimes suddenly in public places—waiting in line at the bank, stopped at a red light. There were times the pain engulfed me and I wondered how I could possibly continue to live when my child was gone, dead forever. I couldn’t sleep. People assured me he was at peace, but if that was so then why did I hear him crying at night?

We are allowed a year to grieve. When that first anniversary was approaching, I dreaded it. Grief kept me connected to my son. Everything that had happened in that year was a first: the first Christmas, the first family vacation, and—so close to the anniversary—the first birthday. I did not want time to take me any farther away from the last time I’d held him, from when he was alive.

But it did. And slowly I healed. The pain, which had been a searing spotlight that obliterated everything else, began to dim until finally it was a small soft light in the distance. I don’t remember how long—two years, maybe three. But it eased, and I found my way back to joy again.

Now, according to the draft DSM-5, I would be allowed two weeks to make that journey before being diagnosed with a mental illness. Continuing symptoms after that—sadness, sleeplessness, crying, loss of interest in everyday pleasures—would represent pathology. At two weeks I was just beginning to realize the finality, the enormity, of what had happened. How do you say goodbye to someone you love deeply in two weeks? Did my child’s life mean so little that I should have been able to shake it off and get on with it after two weeks? Is any life that insignificant?

There will be those who need professional help. Some people get stuck in the pain or the pain is so overwhelming it engulfs their lives. But most of us just need support, acceptance, and understanding. And time.

Today is my son’s birthday. I will celebrate his birth. But, like every year on his birthday, the pain flares up, bright enough to hurt my eyes but no longer bright enough to blind me. I will continue to miss him until enough days have passed that represent the time he should have lived. In other words—I will grieve for him always. I am not mentally ill. I do not have a depressive disorder. I do not need medication or counseling. I need to be allowed to feel both the pain and the joy that loving someone, even with a life so short, inevitably brings.

(Editor’s note: this post was written on March 26, two day’s ago.)

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12 comments

  1. [...] reminded of a post from March 28, 2012, Grief: The Proposed DSM-5 Gets It All Wrong, written by Karen Roush. She states symptoms of grief, “sadness, sleeplessness, crying and [...]

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  2. Yesterday I attended the funeral of a 17 year old boy who shot himself. The depth of grief of his parents and grandparents was overwhelming. All of the 200+ people who were at the funeral were devastasted. To think that this loss will be resolved in 2 weeks, or 2 years, or ever, is ridiculous.

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  3. Reblogged this on Marianna Crane.

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  4. I can emphasize with you on the loss of a loved one. My husband passed away a little more than two years ago, after our 37th anniversary. Today I still grieve, and cry at odd times. When i come home to the empty house at night it is a real trigger for my grief. Two weeks to grieve before it becomes pathological? Utterly ridiculous! My husband and I had a great marriage – he was my soul mate. He died suddenly, and I only received a phone call that he had passed. I still have a lot of emotions going on, but, true, it has lessened somewhat over time. The notion of a two week grieving period in the draft of the DSM 5 should not be included! Everyone has their own time to grieve! It may be short or long, but it depends on the individual. Let’s not label grief as a disease, but rather make it dependent on the individual. Thanks you so much for your story! I am so sorry about your son.

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  5. I feel very sad that the main focus here is “the label.” Mental illness is treatable and thank goodness we have guidelines like the DSM-5 so people can get the treatment they need.

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  6. I relate to the post regarding losing your husband to cancer. And no, one year did not make it better. It has been over two years now, and I am finding myself feeling more like myself most days now. In my case, my stepson decided I should move (the house was part of an estate) just 4 months after the death, and without my consent, put the house on the market and told me to get an attorney. I did, and in the process lost a wonderful daughter in law and two beautiful grandchildren that live in this same community. I saw a counsellor who asked that I pay her in cash, so as to not leave a “paper trail” that my stepson could use against me to say I was mentally unstable(he is an attorney!!) When someone told him it was an emotional time for me, that is exactly how he interpreted it—that I was emotionally unstable!! It was like several deaths, and ended up with me also being diagnosed with cancer, which I believe can be attributed to extreme stress and grief.
    It was a long, hard process, but I am doing well, and am now in a new home of my choosing. Never will I be in another situation like that.
    And, by the way, my husband and I had dated in high school, and were married to each other just short of 15 years. We thought wwe had blended our adult children very well. Let this be a warning to always protect yourself, just in case!!

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  7. I can’t even imagine losing a child and to think that a parent should be over such a loss in two weeks is preposterous. And what a double whammy to tell the parent that he/she is not normal to grieve past the arbitrary deadline. Let’s hope that professional mental health workers use common sense.

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  8. I understand that this proposed revision seems at first glance to be placing a label of “mental illness” on those who rightfully should not have one. And I agree that grief is normal and takes time. I would argue however that this change has little to do with grief as an actual mental illness and everything to do with insurance and billing. As a therapist I see people regularly who by the definitions we have now do not have a “mental illness”. But they still need help. Though therapy isn’t for everyone, for many it’s what prevents that natural process of grief from turning into something bigger, dare I say…mental illness.

    As mental health providers we need to accurately bill for the services we provide, this diagnosis code should be viewed as a means for providers to bill accuratly, not as a pathology or mental illness.

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  9. Thanks so much for sharing your story and shedding light on this poignant issue.

    Who can really define the time allowed for one to grieve? I greived furiously over the loss of my child in 2004. I am certainly not mentally ill but it took me much longer than two weeks to feel much less grieve the death of my baby girl. No DSM or anyone for that matter should ever be able to determine the length of time it takes a person to grieve.

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  10. The entire idea of diagnosis by committee is flawed: for clinical use, diagnosis has value only when it guides prognosis and treatment. By these criteria, DSM has little relevance for clinical practice, and in Psychiatric work one rarely sees it used or referenced, except as it pertains to its primary purpose: billing, and occasionally research. If we were honest, we might cut out the middleman and have the insurance companies define diagnoses. as current practice seems to focus primarily on their incentives already.
    As for patients and families, I have long educated them to focus where the actin is for them: symptoms and treatments. Diagnoses are just words. I might note that diagnosis & treatment by expert committees gave us centuries of humors, leeches, and blood-letting. I’d prefer to wait for real results based on science, than to speculate as to at what point normal grieving suddenly becomes, by definition, pathologic. Such arguments seem more about ideology and self-interest than anything else.

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  11. This is not only an indictment of the proposed DSM rule on grieving but a poignant and beautiful tribute to your lost son. It’s a piece that also provides solace in knowing that—although grief is a universal human experience—for each of us, it is also a unique one. Thank you for writing it.

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  12. It was 5 years after my husband died that I stopped remembering what occurred every day in the 2 months before he died. And I had had 2 years of the cancer diagnosis to know what was coming. Anyone who is done grieveing in 2 weeks has a mental disoder. Ridiculous.

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