For a while, Davina Rivers thought something wasn’t right with her. “It will be seven years in November since my husband died, and I’m still grieving for him every day, I miss him every day, I wish he was here every day,” she says. She has suffered from depression before, and she thought her intense grief had settled, like a grey mist, into a kind of depression. Rivers and her husband, Eric, married in 1998, and they have three daughters; he died in 2015 at the age of 49. She spoke to Eric’s brother recently, to celebrate the achievement of one of her daughters, which Eric would have been thrilled with. “He said: ‘Oh, yes, I thought about him one day this week’, and I just thought, “How different our lives are.” For me, it’s an everyday feeling: whenever I wake up, and go to sleep, I miss him.”
She has met other widows online, and feels she is different. “I see people start new relationships and get married and go on to have great happiness in their lives, and I don’t see that for myself, somehow. My husband, I think he was my One.” Losing him, she says, has affected everything. Rivers, 61, continued to work after her husband was diagnosed with motor neurone disease, and after his death, she went back to work as a podiatrist five months later. “But I found it very difficult. I think the trauma of it all had a massive impact on me. I became quite introverted. I didn’t want to be a burden to people so I stopped going out. I don’t like going out walking, which is the really strange part of it: it’s almost like I don’t like people seeing me. I can get up and go to work, but I find it difficult to go for a walk.” And so, she says, “I seriously thought that there was something wrong with me.”
The idea of prolonged or extended grief has been a controversial one – is it possible, or desirable, to put a time limit on a natural human emotion? – but in March, after years of wrangling, the Diagnostic and Statistical Manual of Mental Disorders (DSM) officially recognised prolonged grief disorder (PGD). The inclusion in the US publication, which doctors use to diagnose disorders, will mean that those who meet the criteria – people still in intense grief after a year – can have their treatment covered by insurance companies. The DSM is not used in the UK, but it is influential, even as it is also criticised for “medicalising” and labelling common human experiences; the inclusion of prolonged grief disorder has caused some controversy.
“I feel quite disturbed that it has been described as a medical problem that needs to be fixed, because I don’t think it is,” says Rivers. Grief is entirely subjective, and if for whatever reason she isn’t considered healed, then that is a societal problem, she says, not a medical one. “I think society puts you under pressure to get over it.”
There are pros and cons to this new diagnosis, says Dr Lucy Selman, associate professor in palliative and end of life care at the University of Bristol, and founder of the Good Grief festival. “There’s been a lot of controversy about the DSM for many years, and mental health advocates have argued against the way the DSM divides up different conditions,” she says. For some people, a diagnosis can be helpful; for others, there is “a lot of recognition of the damage some of those labels can do to people and how they can stick with people for many years. So I think it’s a bit of a double-edged sword.”
The general idea it has raised on grief – that it is something you “recover” from – is largely unhelpful, she says. “Ultimately, grief can be a really transformative experience; it can change who you are as a person. So the idea that it’s just something you move through, and then you come out of the other side the same as you were before, doesn’t really hold.”
Grief, she says, “is interesting, because it has a psychological dimension, but it’s something which is going to happen to all of us and it’s more of a social issue”. Most people cope with even profound grief, she says, usually with the support of their social networks – family, friends, their community – but there is a significant minority, “probably about 10% of people who have more complex responses to grief, so they might get stuck and ruminating, feel that they’re unable to move through their grief and really find a new identity and integrate it into their lives and carry on.” It is people within that group, she says, “who will potentially end up with a diagnosis of prolonged grief disorder, and that might be helpful”. With a formal diagnosis, they might be able to access specialist help.
“What I would argue is everyone who has been bereaved is likely to have some need for support,” says Selman. If we were a more grief-literate society, and knew how to support them, that 10% who struggle – and the smaller number who are diagnosed with PGD – might not end up in that situation: “People would be more familiar with what grief is. We would feel comfortable being there for people who’ve been bereaved, and sharing as much as we want to about how we’re feeling in our grief. It always surprises me how people, sometimes, can really struggle with just the very simple thing of saying: ‘I’m so sorry that happened to you.’” The inclusion in the DSM of a disorder that will only apply to a minority of people is not, she says, the answer to the bigger problem: that our society is not good at grief.
We have become unaccustomed “to dealing with and living with negative emotions and so we very quickly jump to pathologise those, but all those negative emotions that you experience in grief are an absolutely normal, natural part of it,” says Dr Lucy Hone, resilience researcher and co-founder of Coping With Loss, which runs practical support courses. “One of the early questions is: how long am I going to feel like this for? How long is this terrible aching, longing, and disarray going to last? And the truth is we can’t put a timeline on that, but what we do want people to be is generally managing to function. Our benchmark is that as long as you’re generally managing to function, then that’s natural grief, so don’t expect all the negative emotions and the disbelief to leave you quickly.” There’s a good chance, she says, “they won’t go within a year”.
The concept of a grief that you “get over” is quite modern, says Dr Brandy Schillace, editor in chief of the BMJ’s Medical Humanities Journal and author of Death’s Summer Coat: What the History of Death and Dying Teaches Us About Life and Living. In the 19th century, grief was visible, she says. “Queen Victoria grieved her husband for the rest of her life: she never stopped wearing black and no one went: ‘The Queen’s being excessive,’” says Schillace. “There were rules to grief. For instance, the grieving period, in terms of the mourning – the clothing that you wore – was longer if you lost your husband, than if you lost your wife. And if you’d lost your kids, it was different. So there was this idea that time periods adjusted, based on the grief.” You could tell when someone was “in mourning”, she says. “Whereas today the impulse is to look like you’re not grieving; they normalised grief, by making it quite public.”
Bereavements were not only more common – many children died before the age of five, and people died of illnesses and diseases that are not fatal today – they were also more visible, and a state of grieving was considered “normal”, says Schillace. “We’re very privileged in the west and we are screened from death and dying. You get sick, you go to a hospital, nobody has to watch that happen.”
The change, she thinks, happened gradually. Along with advances in medicine and longer life expectancies, the rise of capitalism and postwar productivity has also had an impact, she believes. The idea of “productivity” being the optimum state “is western, but it’s very American. Within that concept, it doesn’t make space for grieving or illness or all sorts of things, even care of children. We have created a somewhat artificial concept of ‘normal’ being a state of non-grieving. Then of course, you’re going to pathologise grief and [believe that] if you are clinging to your grief, that’s an abnormal way to live your life, as opposed to recognising that grief is a constant intimate companion. When you lose someone close to you, it’s more like an amputation. It’s not like getting the flu and recovering. It’s like: ‘I’ve lost a limb, and now I have to adjust.’ So nothing you do is exactly the same again.”
Holly Prigerson, professor of geriatrics and co-director of Cornell University’s Center for Research on End of Life Care, has been braced for the criticism of prolonged grief disorder. She pioneered its recognition, in research going back to the 1990s. Working in geriatric psychiatry, she was part of a team researching the effects of antidepressants for the treatment of bereavement-related depression in later life. She would sit in meetings, she recalls, where the depression and anxiety scores dropped throughout treatment, but she noticed that grief symptoms were not easing. Her colleagues, she says, “were like: ‘That’s OK, grief is the normal reaction to loss. We’re psychiatrists, we care about depression and anxiety, and we’re delighted we are able to move the needle on that.’ Which is all good – the only question is: how do you know that grief might not be a problem for these people as much as depression and anxiety?”
She decided to study it and realised that a “grief syndrome” was different from symptoms of depression and anxiety. “Then the question was: what does that matter?” Prigerson followed up with participants over a period of time, “and what we found was that grief cluster, over and above the symptoms of depression and anxiety, was a better predictor of things like increases in suicidal ideation and was associated with hospitalisations for heart attacks.” It was associated, she says, with sleep impairment, divorce and “a whole bunch of negative outcomes that I’ve spent the last 30 years showing”.
Prigerson is frustrated that the criticism she and the DSM have received for “trying to medicate grief” has confused healthy and normal grief with prolonged grief disorder. “It’s rare,” she says. “It’s very difficult to meet our criteria, and among bereaved people, 4% or less meet these criteria. It’s severe, distressing and disabling levels of yearning and pining, and preoccupation with the deceased. The immediate acute sense of grief that is normal and natural right after someone you love has died – we’ve done studies of how these symptoms change over time.” For the majority of people, after six months, they are on the decline. “But for people with prolonged grief disorder, it’s like the loss happened yesterday; they’re still in a state of shock and disbelief and they don’t know how they’re going to get their lives together … it’s like someone just pulled the rug out from under them. They’re stuck in this state of distressing mourning.”
What it is not, she says, is people still missing a loved one, or experiencing a wave of grief, many years later. “Grief travels with everyone. My mom died of Covid a year ago and every day there’s a time when I miss her, I think about her,” she says. “But I’m not stuck feeling like life is meaningless, and adrift because of the loss. Do I feel pangs of grief? Yes, and that’s normal and natural and not cause for concern. That’s just being a human.”
With a new disorder comes potential new treatments, which could be therapy or drugs. One, naltrexone, which is used to treat addiction, is being trialled, again raising controversy. “People are saying: ‘You’re calling love an addiction,’” says Prigerson. “[But we’re not] saying we’re trying to give you a pill that will take away your grief. We know that antidepressants have not proved helpful, and certain types of psychotherapy have not proved helpful. This is about trying to understand something better to help those who are stuck, and in a lot of pain.” What does seem tricky to work out is which people, if any, would get better in their own time, beyond the one-year period. Prigerson says the majority with prolonged grief don’t, but accepts that some do.
Hone is sceptical, not necessarily about the diagnosis, but about how it may be treated by those who don’t understand it, or who don’t understand grief. “Who’s training those counsellors? And what material are those counsellors going to be giving out? Because at the moment, the most common model of grief that is still coming out of universities and all kinds of health courses is the ‘five stages of grief’, and there is no empirical evidence to support [that].” One of the most common reasons people seek bereavement counselling, she says, is because “they feel they’re not grieving properly”; they are not experiencing the denial, anger, bargaining, depression and acceptance that took on a life of its own in popular consciousness, even though its creator, the psychiatrist Elisabeth Kübler-Ross, later said she regretted the way the five stages had been misunderstood. “It’s an unhelpful, popular myth that needs to be retired,” says Hone.
People expect their grief to reduce over time, she says, “and it doesn’t, but what happens is that your world grows around it, so it reduces relatively. That is Lois Tompkins’s theory of grief, and we find in our work, that gives people hope. We always say grief is as individual as your fingerprint: everybody grieves differently, there are no rules, you have to find what works for you.” When the loss is especially profound – losing a child, for instance – “it challenges all that you’ve assumed about the world, everything that you think you know the way that life should unfold. And so what you have to do is slowly start to remake sense of the world again.”