In 2013 the psychology’s bible, the Diagnostic and Statistical Manual, stopped short of listing complex grief a psychological disorder but noted it was a condition that needed more research.(Illustrations by Mitch Blunt)

When the sorrow doesn't end: Could chronic grief be a medical condition?

Andrea Volpe
The pain of bereavement is supposed to ease with time. When it doesn't, psychiatrists call it 'complicated grief' and it can be treated.

After Stephanie Muldberg's 13-year-old son Eric died of Ewing's sarcoma, a rare type of cancer, in 2004, she was lost in a sea of grief. Her days were long, unstructured and monotonous. She barely left her home.

When she did leave, she planned her routes carefully to avoid driving past the hospital, just a few kilometres away, where Eric had been treated during the 16 months of his illness, or the fields where he had played baseball. Grocery shopping was a minefield, because it was painful to contemplate buying Eric's favourite foods without him. To enjoy anything when he could not felt wrong.

Muldberg never thought she would be able to return to the temple where he had celebrated his bar mitzvah – and where his funeral was held.

Looking back, she describes herself as not knowing how to grieve after Eric died.

"I didn't know what to do, how to act in front of people – what I needed to do privately, who I could reach out to. I was fearful of making people more emotional, too emotional, and having to comfort them," she says. "I didn't know how to talk about what I was thinking."

She thought, if she stopped grieving, her memories of Eric would fade and she would lose her connection to her son for ever.

The passage of time often seems the only remedy for grief but time didn't help Muldberg. In the years following Eric's death, she felt consumed by grief.

Then her family physician heard a talk by Columbia University psychiatrist Katherine Shear about treating chronic and unremitting grief and thought Shear might be able to help Muldberg.

Four years after Eric died, Muldberg arrived at the New York State Psychiatric Institute in Manhattan for her first meeting with Shear. She answered Shear's questions with as few words as possible. It was as if she was barely present in the small, windowless room. Her face was drawn and clouded. She sat crumpled in her chair, arms crossed tightly around her as if the weight of her loss made it impossible to sit up straight. It felt to her as if Eric had died just the day before.

Shear diagnosed Muldberg with complicated grief, the unusually intense and persistent form of grief she has been researching and treating for almost 20 years.

Grief, by definition, is the deep, wrenching sorrow of loss. The initial intense anguish, what Shear calls acute grief, usually abates with time. Shear says complicated grief is more chronic and more emotionally treated intense than more typical courses through grief, and it stays at acute levels for longer.

Researchers estimate complicated grief affects about 2% to 3% of the population worldwide. It affects 10% to 20% of people after the death of a spouse or partner, or when the death of a loved one is sudden or violent, and it is even more common among parents who have lost a child. Clinicians are just beginning to acknowledge how debilitating this form of grief can be. But it can be treated.

I first learned about complicated grief while riding the subway in Boston, where I read an advertisement recruiting participants for a study at the Massachusetts General Hospital, which I later discovered was related to Shear's research. By then, I had been a widow for about a decade.

I would be the first to say that my path through grief has been intellectual. I have spent years contemplating what grief is. That subway advert made me wonder: Was my grief a disease? To be diagnosed with an illness is to seek – or wish for – a cure. But conceiving of grief as a disease with a cure raises questions about what is normal or abnormal about an experience that is universal. Is grief a condition that modern psychology, with its list of symptoms and disorders and an ample medicine cabinet, should treat, as though it is an illness rather than an essential part of being human?

Grief is bigger and more complicated than just five stages
For something so fundamental to being human, there is still a great deal we don't know about the grieving process. It wasn't until the 20th century that psychologists and psychiatrists claimed expertise in understanding our emotions, including grief.

The idea of grief as something we need to work through actively started with Freud. He believed we have a limited supply of psychological energy and he viewed the central emotional "task of grieving" to be to separate ourselves emotionally from the person who died so that we can regain that energy and direct it elsewhere. His theory of "grief work" persists, often in tandem with newer theories of grief.

If grief is work, then Elisabeth Kübler-Ross provided the direction for how to do it. She first proposed the five-stage model in 1969 as a way to understand the psychology of the dying and it quickly became a popular way to understand bereavement. Today, those stages – denial, anger, bargaining, depression and, finally, acceptance – are practically folklore.

But it turns out grief doesn't work this way. In the past several decades, more rigorous empirical research in psychology has challenged the most widely held myths about loss and grief.

It's now an axiom of grief counselling that there's no one right way to grieve. That seems like a good thing but it's also a problem. If everyone grieves differently, and there's no single theory of how grief works, then who's to say that someone like Muldberg isn't making her way through grief in her own way, by her own clock?

Even though it was clear to her and to those around her that, four years after her son's death, she was still suffering, bereavement researchers don't agree about how to explain why her grief was so prolonged or what to do about it.

'Grief is a form of love'
"Grief is not one thing," Shear says. "When it's new, it crowds out everything else, including even people and things that are actually very important to us. It stomps out our sense of ourselves, too, and our feelings of competence. We think of grief as the great disconnector but, over time, it usually settles down and finds its own place in our lives. It lets us live in a meaningful way again. It lets us have some happiness again."

Shear, who is professor of psychiatry at Columbia's School of Social Work, explains the underlying principle of her work, which is that "grief is a form of love".

Attachment is what gives our lives security and meaning. When an attachment is severed by death, grief is the response.

She explains that it's our close bonds to those dearest to us that also help us want to care for other people and confidently explore the world. These attachments are woven into our neurobiology. The longing and yearning of acute grief, and the feeling of unreality that comes with it, are symptoms of just how much grief short-circuits our biobehavioural wiring.

Shear agrees that over time most grieving people integrate their loss into their lives. But people with chronic grief face complicating factors. Complicated grievers tend to be women. They are often excellent carers but not so good at taking care of themselves or accepting help. Often, their emotional reserves of self-compassion and self-motivation have been drained.

Shear says "we don't grieve well alone", but people with complicated grief become isolated because their grief has remained at high levels for so long – the people around them may feel that they "should have got over it by now".

Shear believes that adapting to grief and loss is "a normal, natural process". "We're not talking about grief itself being abnormal. We're talking about an impedance in some problem of adaptation." Think of it this way: her therapy jump-starts a stalled process, the way a defibrillator restarts a stopped heart.

A pioneer but not an outlier
In the 1990s, Shear was researching anxiety and panic disorders at the Western Pennsylvania Psychiatric Institute and Clinic when she became involved with research on depression and anxiety in elderly people. One of the common triggers for depression in the elderly is the death of a spouse, and the team she was working with identified a cluster of symptoms in depressed patients that weren't depression.

Shear's team included psychiatric epidemiologist Holly Prigerson who had published a 1995 questionnaire that identified complicated grief as a specific syndrome and could accurately assess its symptoms. Shear has relied on it as a diagnostic and assessment tool in her research ever since. Shear and her colleagues also used it to design a new treatment, complicated grief therapy.

In their first meeting, Shear asked Muldberg to keep a daily grief diary, recording and rating her highest and lowest levels of grief. Every day for almost half a year she paid such close attention to her grief that it became inscribed in her daily life. The diary was one of several techniques Shear used to help Muldberg look her grief in the eye.

Muldberg says the grief diary helped her to pay attention to herself in a way she hadn't been able to do in the four years after Eric's death. Using the diary, she began to see that she had some happy moments interspersed with some low times of grief.

"There were always going to be hard times during the day for me, but I wasn't only focusing on the hard times. I was starting to learn how to move forward."

Complicated grief therapy takes place over 16 sessions, structured by techniques adapted from approaches used to treat anxiety disorders, including cognitive behavioural therapy, a well-researched approach to psychotherapy, Shear says. The structure itself is part of the therapy because structure is reassuring to people who are feeling intense emotions.

Shear has been testing complicated grief therapy since the mid-1990s. In 2001, she and her colleagues published a small pilot study that showed promising results. Since then, they have published several randomised controlled studies supported by the US National Institute of Mental Health, demonstrating that complicated grief therapy helps patients to reduce their symptoms better than conventional supportive grief-focused psychotherapy. Shear is a pioneer but she's not an outlier.

A group therapy version of complicated grief therapy is being studied at the University of Utah. Researchers in the Netherlands and Germany are also exploring variations on cognitive behavioural therapy and exposure therapy to treat traumatic and prolonged grief. And a recent study in Wales confirms one of Shear's main findings, which is that the techniques in her treatment are more effective together than separately.

Facing the pain
A few sessions into her treatment, Shear asked Muldberg to do something she had never done, which was to tell the story of the day Eric died. During the course of three weekly sessions, Muldberg told the story, rating her levels of emotional distress as she did so. The purpose of this technique is to "help people connect with the reality of the death in the presence of a supportive person who is bearing witness to it", Shear explains.

"We want to keep grief centre stage," she says. "If you do let yourself go there, paradoxically your mind finds a way to face that reality and to reflect on it."

Then, as with the grief diary, Muldberg had "homework" – listening every day between sessions to a tape of herself telling the story. At first, this was distressing but she learnt how to manage her emotions, recognising that she wasn't going to forget Eric. The intensity of her feelings began to lessen, so that by about halfway through the therapy she began to feel better.

A few weeks after Muldberg started revisiting the story of Eric's death, she worked with Shear to make a list of the places and activities she had been avoiding since he died and gradually started trying to face them. Shear calls this "situational revisiting", a form of prolonged exposure therapy.

"We do this to provide people with an opportunity to confront the reality of the loss and actually understand its consequences, because being there without the person is going to be different to being there with the person."

Reimagining the future amid great loss
For Muldberg, many of the things she had avoided were the everyday parts of being a mother, such as going shopping, but "I didn't realise how much harder avoidance was than doing some of these things".

With Shear, she broke down tasks, such as driving past the baseball field where Eric had played, into smaller steps until she could do them again.

In one of my conversations with Muldberg, I remark that compli¬cated grief therapy seems counterintuitive, almost confrontational, and that these exercises seem extremely emotionally demanding.

She is quick to correct me. Therapy was challenging, she says, but it came as a great relief to finally feel understood and to have the support to face Eric's death. "When I started to do things, I started to feel better," she says.

For Shear, "feeling better" is a sign that our natural adaptive abilities are kicking in, allowing a person who is suffering from complicated grief to begin the emotional learning process that ultimately helps grief subside. This also creates an opening for the person to begin to imagine their life after a devastating loss.

At the same time that Shear was helping Muldberg come to terms with the reality of Eric's death, she was also helping her to begin to envision the future. Part of losing someone very close, Shear says, is that we lose our sense of identity. Part of grieving is regaining it.

In another complicated grief therapy exercise, the therapist asks a scripted question: "If someone could wave a magic wand and your grief was at a manageable level, what would you want for yourself? What would you be doing?"

Someone with complicated grief can't imagine a future without the person they have lost, or without the unrelenting, intense grief that's taken up residence in their life. It's a future-oriented question for someone who has lost sight of the future.

Just asking the question, Shear says, can activate our innate exploratory system and spark hope.

Is complicated grief an illness?
Complicated grief therapy is challenging but it works. Yet Shear's therapy has sparked controversy, starting with the very idea that there is a form of grief so severe and debilitating that it meets the definition of a mental illness.

Shear and colleagues have advocated for a grief disorder to be included in the Diagnostic and Statistical Manual (DSM), psychology's diagnostic bible, because they believe complicated grief is a clear-cut, diagnosable syndrome, separate from depression, anxiety or post-traumatic stress disorder.

Without sanction by a DSM diagnosis, psychotherapy in the United States is not covered by health insurance. Without insurance reimburse¬ment, complicated grief therapy is out of most people's reach.

In 2013, the DSM-5 listed persistent complex bereavement disorder as a "condition for further study", calling for more research on the issue.

The major issue therapists have with complicated grief is that they believe it pathologises a fundamental human experience.

"Medicalising or pathologising the experience of someone who is having difficulty after a death does not do justice to the full social and cul¬tural context in which he or she is grieving," writes Donna Schuurman, the senior director of advocacy and training at Portland, Oregon's Dougy Centre, which supports grieving children and families. "Grief is not a medical disease; it is a human response to loss."

Grief is a problem of narrative
One way to answer the question of whether grief is a disease is to ask whether the treatment provides a cure. Muldberg describes her grief as "a wound that wasn't healing" but complicated grief therapy isn't a cure the way antibiotics cure an infection. Grief doesn't end; it just changes form.

Muldberg says complicated grief therapy taught her how to live with grief. She still grieves for Eric but she is also back in the world. She travels with her husband and daughter. She volunteers for the Valerie Fund, an organisation that supports families of children with cancer and blood disorders, which helped Eric and their family when he was sick.

The more I thought about my conversations with Muldberg, the more I thought about how therapy with Shear helped her to put Eric's death into the context of her life story.

The idea that a story needs a beginning, middle and end goes back to Aristotle. People with complicated grief can't see the arc of their own stories. They can't get to what classic plot theory calls denouement – resolution.

Most of us, when faced with a loss, find a way of putting what happened into the form of a story: this is what happened, this is who I was, this is what the person who died meant to me, and this is who I am now. But people who have complicated grief can't do this.

Grief is a problem of narrative. A story, in order to be told, needs a narrator with a point of view who offers a perspective on what happened. But you can't narrate if you don't know who you are.

Many of Shear's therapy techniques are about learning to narrate in the face of great pain and devastating losses.

Plotting out the story restores the narrator and the narrative. Then, you can begin to imagine a new story, a new plot for yourself. It's not a choice between grief or living, remembering or forgetting, the way Muldberg once worried it was. The book of life is a multivolume set. A sequel can only start when the first volume is brought to a close and when the narrator knows she's going to be all right.

This is an edited version of a story originally published by Wellcome on Mosaic, mosaicscience.com.

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