Many of us have known someone who loses a spouse or child and just never seems to get over it. Some researchers say that is not just folklore but a diagnosible mental illness they call “Prolonged Grief Disorder.” As the American Psychiatric Association considers establishing this new diagnosis, we survey divided opinion on how to deal with prolonged grief.
"Time Will Tell: Pathways to Prolonged Grief, Pathways to Acceptance" By Holly G. Prigerson, Harvard Medical School (click the picture for the full presentation)
Joyce Lopes met her soul mate at a bowling alley in Fairhaven in 1988. Ten years after a whirlwind romance and marriage, Tony was diagnosed with cancer of the esophagus.
He died six weeks later.
Joyce fell apart. She couldn’t go back to work and only got out of bed to deal with her 6-year-old daughter’s basic needs. She held out hope that her blanket of despair would lift if she could make it to the one-year anniversary.
JOYCE LOPES: I had been told you get through all the firsts and then you start to heal. Unfortunately, it didn’t work that way. Month 15, I was suicidal. They talk about steps going through grief. I think I probably got stuck many times in all the steps.
Lopes hung on, trying different medications. She joined a widows’ support group which helped. Five years after Tony died, she was diagnosed with breast cancer, which Lopes believes was a result of her poor mental and physical health.
Ten years later, Lopes is still grieving. She has not returned to work and only leaves home when necessary.
LOPES: A day does not go by that I do not think about my husband. I say goodb night to him, I feel his presence, don’t have any desire to go out and do things. What my activities are right now is based on my 16-year-old daughter and her school functions.
HOLLY PRIGERSON: It’s just really sad. That’s the whole motivation for wanting to identify it and treat it. It’s just people wasting and waiting. It’s needless.
Holly Prigerson is the lead proponent in a movement to establish “Prolonged Grief Disorder” as a new mental-health diagnosis. Therapists would consider it for clients who, six months after the loss of a loved one, do not seem to be working through their grief and aren’t moving on with their lives.
The proposed symptoms include confusion about who you are without your spouse or child, inability to trust or care about even other close relatives, avoiding reminders of the loss and persistent numbness, emptiness and shock.
But Prigerson, who studies bereavement at Dana Farber Cancer Institute, says the key symptom that makes Prolonged Grief Disorder different from depression or anxiety is an intense yearning.
PRIGERSON: What grief is, is wanting what you can’t have. That hankering and yearning and pining and craving for something that you think is essential to your sense of happiness and well-being.
In the current “DSM,” or “Diagnostic and Statistical Manual of Mental Disorders,” grief is defined as the normal response to loss. It is not considered a medical diagnosis and isn’t something doctors are paid to treat.
If it is approved as a new disorder, there would be established symptoms, treatment for patients and doctors could be reimbursed. Prigerson’s research suggests that 10 to 20 percent of Americans who suffer a loss experience prolonged grief.
Joyce Lopes believes she is among them and is relieved to think there may be a diagnosis that would acknowledge her struggle.
LOPES: It’s knowledge, it’s I’m not crazy, it’s something written that this happens sometimes. And it might even educate friends and families.
But others who find themselves grieving years after a loved one has died object to calling their experience is a mental-health condition.
ALLISON: I’m not keen on the idea or it being called a syndrome or a disorder.
That’s Allison, who lost her husband John to lung cancer in 2006.
ALLISON: Life is almost back to as normal as it is going to get, but I still feel very alone.
CRAIG: I don’t think that we disagree that there is prolonged grief. It’s more that grief by definition is prolonged.
Craig and Allison, who ask to use just their first names, belong to a bereavement group that began at Dana Farber a little more than three years ago and continues now, informally, in members’ homes. They are both frustrated by the widespread expectation that they should have finished grieving after six months or a year.
CRAIG: It’s pretty universal. People will just sort of, have enough of it, and there’s a sort of pressure to not bring it up.
Some psychiatrists are not convinced that the research shows a clear difference between normal and prolonged grief. Karl Goodkin, a psychiatry professor at Cedars-Sinai Medical Center and UCLA’s school of medicine, has been working in the field for 18 years. He believes prolonged grief is much more common than is generally acknowledged and is worried about patients who aren’t getting help. But he’s also worried about the effects of diagnosing people who don’t have it.
KARL GOODKIN: Part of that involves differentiating people who are termed pathological because their grief is on going. That can become stigmatizing. And in addition we still really don’t know where this cutoff should be.
Prigerson counters that numerous studies in the US and Europe have confirmed the criteria for Prolonged Grief Disorder. But she and colleagues also face skepticism from some leading psychologists who study loss. They argue, as Craig and Allison did earlier, that prolonged grief is not a separate medical or mental state but rather one end of a continuum. And they question whether the push to establish this new disorder is largely about creating a billable diagnosis, a new area of research or a problem that pharmaceutical companies can develop medicine to treat.
WILLIAM NARROW: We definitely are very sensitive to the relationship between medicine in general and the pharmaceutical industry.
William Narrow is the research director for the American Psychiatric Association’s task force on revising the DSM…the manual that defines mental disorders…where prolonged grief is under review.
NARROW: We’ve had a detailed and painstaking process to make sure that conflict of interest issues are minimized to the extent that pretty much is humanly possible.
It will be several years before the APA decides if Prolonged Grief Disorder will be included in its next manual. In the meantime, testing for possible drug, online and interpersonal treatment is underway. Joyce Lopes may enroll in one of the studies… hoping for something that might help her find meaning in life again.
Martha Bebinger
Thanks to Dr. Michael Miovic at Dana Farber for his help with this story.
To people that have suffered the loss of a spouse, child or anyone else of significance, the pain is real. I own a funeral planning/memorial site, Otrib.com, that is dedicated to helping people manage end of life events. One of the first things I observed after launching the site is that my preconceived notion of how long people “normally” mourn was wrong. It is common for people to grieve years after they have witnessed the passing of a loved one.
These people don’t need treatment with drugs and they certainly don’t need “experts” telling them when they “should” be over their grief. Perhaps the APA will conclude that grieving for a person over a certain period of time is a disorder. If they do, I hope they have the decency to recommend cognitive therapy as a way to help one address these issues. We are creating a chemically dependent society with every real or perceived ailment being treated with a pill.
To regulate and control what is a natural response to death, seems to me to overlook one obvious fact: We are not Vulcans – cold, emotionless beings.
Just like depression and anxiety, grief is on a continuum of severity. It also, as in the case of Ms. Lopes, can last for at least 10 years, make a person find it exceptionally difficult to take care of family members, themselves and to work. As she describes it, grief can make some people feel like they are lost and that there is no point in living. As in Ms. Lopes case, severe, chronic grief can make someone suicidal. This is not the normal response to grief, but it is the plight of a significant few. Should this be ignored when helpful therapies have been shown to improve a bereaved person’s adjustment?
It should not be ignored. That’s the virtue of organizations like Hospice. Indeed, that’s part of the reason why I started my site.
But I’ve seen enough people in mourning, who have been prescribed drugs to overcome their “abnormal” grieving, and their feedback is that the drugs only make things worse. If the APA wants to promote a non-chemical approach to managing grief, fine. But, it was clear from the above story that there is big money pushing to “label” this condition and I question the altruism of their motives.
I lost my husband to divorce, after an incident of domestic violence. He was a real Dr. Jekyl/Mr. Hyde personality, and I absolutely adored Dr. Jekyl. He was associated with everything in life that I loved — my children, my home, our dogs, my neighborhood, the whole state in which we live, the seasons, my commute to work, and all the activities we used to do together, and any activities he enjoyed himself, but I just enjoyed because it made him happy (i.e. spectator hockey, football, etc.). I did not feel like a divorcee. I felt like a widow. After I got over my anger from the beating, I grieved for the man I thought I had married, and the good life we shared for 10 years, before his temper started flaring. (The divorce proved he was not the man I thought he was. He tried hard, I think, but he had a history of anger mgmt. Eventually, I discovered his first marriage had ended with a similar incident of domestic violence.) In spite of, or because of this dicovery, I felt all those things described by Mrs. Lopes. Life did not seem worth living. I felt numb, even towards my own children, now teenagers. I hate cigarettes, but started chain smoking. I lost 30 pounds in just a few months. I had trouble focusing. I could not read or watch TV or go to the movies. There was no escaping the pain. I emotionally abandoned my youngest daughter (age 15, always on the honor role and active in school activities) whose grades then plummeted, and she dropped out of all activities. Eventually I lost my high paying executive job, which was the only thing that occasionally brought back my old creative self. I was suicidal for several years. I only started to recover when he finally moved out of the state. But still, after six years, I grieve for the “happy marriage” and joyful family life that he gave me. Not a day goes by that I do not think of that life. Whether it was all an act on his part or not, I will never know. Perception is reality, and my reality was the family I always dreamed of. A rotator cuff injury within the first year of our separation put me on prescription pain killers off and on for a few months. I found that this was the ONLY medication that made my “broken heart” stop hurting. It was, indeed, a crippling, physical as well as emotional pain. I am finally starting to recover, I still do not see the point of life. When I hear news stories about people losing their partners or children, I wish I could somehow trade myself with that person’s fate, since I see no purpose in living, and that person is still very loved. When I told my doctor that the painkillers were the only medication that worked on my broken heart, he laughed and said sadly, “I wish I could help you, but I’d lose my license.” Dr. Daniel Amen’s studies on SPET scans of the brain show quite a bit of physical damage to the brain as a result of emotional trauma. And I strongly support anything that can be done to help those suffering from extended grief.
Not a penny of the above research has been supported by a pharmaceutical industry.
I’m glad to hear that the research was not underwritten by a pharmaceutical company. Perhaps the recent stories on Harvard Medical School receiving an “F” on their conflict of interest guidelines have colored my view http://www.nytimes.com/2009/03/03/business/03medschool.html?scp=1&sq=harvard%20medical&st=cse
I meant no disrespect to Dr. Prigerson.
Hi Mandy and anyone else who is looking for help coping with grief. You might start with this website: http://www.adec.org/coping/index.cfm
The Association for Death Education and Counseling can help you find a therapist and has other (hopefully) helpful resources.
Best, Martha Bebinger
Hi there. I am pretty sure I have been coping with prolonged grief disorder for most of my life. When I was 7 years old I lost my beloved father who I totally identified with, I was not close to my mother and was frightened of her. I was never shown how to grieve for my father, my mother was an angry and irritable woman who was addicted to making success in business. My older half brother came to live with us soon after my father’s death, he was an aggressive alcoholic gambler who caused as much chaos as possible for our mother because of her previous abandonment of him. He despised me. I grew up a very lonely and sad little girl and lived for time spend with my paternal grandmother during summer holidays, she was the most important person in my life after my dad died. Sadly she died when I was 16 and I felt tremendous guilt at not having been by her side. My mother became ill with cancer in my late teens. I nursed her to her death when I was 22 and still hold many unresolved feelings towards her. I have not been good at choosing partners and managed to ‘choose’ one emotionally unavailable man after another. The end of each relationship has been like a loss to me and all my unresolved grief erupts each time. My life has defitely been ruptured by my experiences of loss from an early age and I would not be surprised if my brain showed damage because of these traumas. Does anyone know of any clinical trials in PGD that are due to take place in the UK. I would be very interested to be a candidate in such a trial. I am currently having therapy with a jungian analyst but find it very hard to connect to my complicated emotions involving my mother. My sincere sympathy to all who cope with similar symptoms to me, its hell to be so stuck and ‘numb’ to the joys of life.
I lost my son a year and a half ago to a tragic accident. I do feel like I am dying from a broken heart. To lose a child is the most devastating thing a parent can endure.
I can relate,myself is dying of a broken heart-i dont know how to cope.if you need to talk to someone -let me know,id be here to listen.i understand because we are on the same boat.