No one who watched Deborah James's final interviews, after she announced via her Instagram feed that she was stopping active treatment for bowel cancer, can fail to have been moved by it. "I don't want any other Deborahs to have to go through this," she told us. Watching the charity she launched, Bowelbabe Fund for Cancer Research, raise millions within hours of launching was incredible and I cheered along with half the nation when she was made a dame.
Not only has James educated millions on the importance of early diagnosis, but in what may be her final weeks she has also smashed many of the taboos around death. Her brave move has inspired an outpouring of very deserved public grief and reflects a growing impulse on social media not to share a perfect life, but all of life. We have lost many of the rites and rituals around death and grief, but in their place, social media is becoming a platform to express and share the sadness that comes with losing those we love.
More and more people who have experienced grief are talking about it publicly online. Instagram and Twitter accounts such as @livingfamilygrief, @thegriefcase, @thegriefreality and @thegoodgriefproject, to name but a few, as well as hashtags like #livingwithgrief, #griefjourney, #griefandloss and #griefanddeath, are places where people share the experiences of loss.
Individuals, too, post openly about those they love. But this sense of public mourning would have been inconceivable a couple of generations ago. On social media at least, the stiff upper lip has gone – an anachronism we've lost, thankfully, along with bowler hats and starched collars.
Like Deborah James, my sister Nell Gifford turned to Instagram after being diagnosed with breast cancer in 2015. She enjoyed the support she got there, taking followers with her as she shaved her head before chemotherapy or posted stories on trying new drugs.
It was natural that when she died, in 2019, Instagram was the place I turned to remember her. I loved getting messages from strangers who said they felt they "knew" Nell via these posts, despite having never met her or even heard of her before. And I knew that Nell would have loved to be remembered this way. It's also helped me feel less alone in the lonely, and sometimes strangely shameful, process of bereavement. Because grieving someone you love is lonely. Social media is a place I can reach out to a virtual room of strangers to say, look, this was my beautiful sister and this is what missing her feels like, and no one judges me, or suggests it's time I got "back to normal", as you are sometimes told in real life.
This wasn't the first time I had shared the memory of someone I love on social media. In 2013 my mum died after a very long illness, and in recent years, I have often shared memories of her, to celebrate the woman who shaped my and Nell's lives. I often, still, feel a sense of disbelief that both Mum and Nell are now dead, but celebrating them by sharing their image is a powerful way for me to realise my grief. Instagram, I have found, is a place I rest in grief when I no longer feel like soldiering on.
Because relatively recently, soldiering on was what we were expected to do, although the stiff upper lip of my mother's generation is a world away from the grief rituals of the Victorians, who were the last generation to make a pageant of grief. We might criticise that era as one in which ruffles were put over chair legs for fear of causing offence, but they knew how to honour death. If Nell had died in 1880, I might have manifested my grief by dressing in black, while dressing my house with black curtains.
Something I found hardest after Nell died was knowing how to honour the big, colliding emotions I held inside. Society didn't want me to behave how I felt, which was distraught, angry, heartbroken. As I stumbled through the weeks following her death, there might have been something beautiful in adopting some Victorian grief rituals, like wearing jet jewellery, a glass locket representing a tear, or even carrying my tears in a lachrymatory.
These very public mourning rituals were put away after the First World War, when the country might have been brought to its knees if the millions who lost loved ones had clung to elaborate public mourning. Instead, the message that pain should be packed away "in your old kit bag and smile, smile, smile" was powerful. That legendary "Blitz spirit" was admirable, but also, arguably, contributed to a sense that grief was a private matter, something that was, until recently, a compelling characteristic of our national psyche.
As I look back on the path into and through grief that my mother's and sister's deaths continue to take me, I realise that ritual, something we are short of in this country, is hugely comforting in times of loss, as a place to physically manifest feelings. We have lost tear vials and black bonnets, but today Instagram is a ritualised forum to remember those we love; it's also a place to simply remember the person you are missing – something especially comforting in the lonelier days of grief.
Within my memory, the death of Princess Diana was the moment that started this change in the way we grieve, turning that private matter into a shared, public experience. I remember visiting Kensington Palace and witnessing an unprecedented outpouring of public grief. Those hot, tearful summer nights after Diana's death, and our shared experience of collectively having lost someone important, marked a moment when mourning became more public. The habit of leaving flowers by the roadside where people have been killed also grew then, and later, in 2011, Jon Underwood developed the first UK Death Café, inspired by the Swiss tradition of café mortels, which encouraged individuals to congregate to share loss.
Social media has taken this public mourning further. "In my experience the grief communities on social media are generous and supportive," says psychotherapist and author Julia Samuel, who has spent three decades raising awareness about bereavement. Coming together on social to celebrate people we love, as I have done with my sister, and we are all doing with Deborah James, is a painful but beautiful experience. And since Instagram is an image sharing platform, it's an ideal place to share old photos. Personally, I love seeing people's grainy pictures of their darling dad in his 1980s jersey, or the brother who died as a child, or the beloved late wife on her wedding day. I too have found solace in sharing snaps of Nell from since we were children. I miss her every day, but knowing her life continues to bring joy to other people is a source of comfort.
I know I'm not alone in find this helpful, because despite the gathering momentum to break the taboos around grief, death remains something we are, as a society, uncomfortable discussing. We still struggle to find the language to communicate loss, and the empathy required following that loss.
Research by bereavement support charity Sue Ryder found 44 per cent of the UK public admit they felt unsure what to say to a close friend or relative who had lost someone. "People who are bereaved have told us that often their support networks are so scared of getting it wrong, they do nothing at all," says Heidi Travis, chief executive of Sue Ryder. "This is leaving many people feeling isolated in their grief."
Following Nell's death, I wrote a memoir, The Red of my Blood, about my experience of the first year after her death. Since it was published, I've received thousands of messages from people expressing relief about how it helped them understand their own confusing, often buried, emotions after the death of someone close.
Critics of social media might argue it reduces the profound and unique experience of losing someone you love into something rather trite, and there are certainly performative aspects of social media that are less appealing. Responding to someone's grief with an emoji might appear to trivialise the emotions, but in my experience, emojis can be very effective and powerful as a way of communicating what we all want to feel after the death of someone we love, which is love and connection. And scrolling through some of the 44,500 messages that followed Deborah's post telling her followers she was moving to hospice-at-home care, the overwhelming feeling I got was of a powerful wave of love and admiration sending her onwards. "You are so loved," someone remarked, simply, articulating in those four words the love and grief we all felt at hearing this news.
For me, and thousands like me, this move towards a public and, crucially, shared experience of grief has been only helpful. Grief is lonely, and by talking about it together, we can help one another. It reminds me of the words of WB Yeats, which articulate this same impulse we find today, on social media: "Let's talk and grieve/ For that's the sweetest music for sad souls."