Grief isn’t a process that fades over time – it evolves. “What happens,” explains Ben, “is that we grow around our grief. Life shifts constantly around it. One day someone might feel quite upbeat, and the next, deeply sad.”
“Related to that are anniversaries,” he continues. “It doesn’t have to be a birthday or date of death. It could be the date of diagnosis, a wedding anniversary, Christmas… any significant time can intensify grief. For example, a mother grieving a lost child while carrying a new baby may feel immense sadness alongside joy.”
And grief is unique to each person, shaped by their circumstances and relationships. “Grief is not a game of top trumps,” Ben stresses. “Terminal cancer can be a predictable loss for some as they prepare for an ‘ending’. Someone dying suddenly overnight can be experienced as an unpredictable loss. But one isn’t better or worse than the other; the experience is just different for the individual.”
“As a society we can tolerate the idea of older people dying more than children,” he continues. “Culturally we have an expectation that losing someone who’s 95 is easier than losing a child, but that’s just not true. It depends on the relationship; it depends on someone’s coping and attachment. People’s experiences of grief are different based on a host of factors.”
Recognising different types of loss
Many of us don’t realise that there are two kinds of loss, and they don't always involve death. “There’s absolute loss, when there’s a death and a funeral. That has a process and a language we all understand,” explains Ben. “But there’s also ambiguous loss. That’s when someone’s health or identity changes, such as in cases of mitochondrial disease or dementia. That’s a very different experience of grief, and one much less well understood by society. Ambiguous loss can be harder to deal with because there’s no finality,” he notes.
Grief can also stem from losing abilities like sight, hearing or mobility. For those with rare conditions like mitochondrial disease, it’s compounded by the challenge of explaining the condition rather than focusing on emotions. “That’s more common with mitochondrial disorders than other conditions like cancer,” he continues. “There’s no medicine for that, it’s just about awareness. What The Lily Foundation are doing in constantly raising awareness about mitochondrial disease helps people to recognise that it’s a degenerative condition for many. That helps with topics like ambiguous loss.”
One emotion often associated with ambiguous loss is guilt. “Guilt is a common yet complex emotion,” Ben explains. “Caregivers often deal with immense guilt for resenting caregiving responsibilities or relying on external help. That person’s not the person we married or the child we’d hoped for. The immense guilt we feel for even thinking that is incredibly difficult. Sometimes with mitochondrial disease that can be complicated by the genetic link – mothers might feel guilt at the connection between their genes and passing on the condition.”
Ben classes guilt as a ‘sticky’ emotion. “Feelings like anger can be expressed and extinguished quickly,” he expands. “Emotions like guilt and shame hang around and are more insidious. What I notice a lot in my work is the bravery it takes for people to talk about their guilt or shame. It takes an immense amount of trust and a feeling of safety to do that. Often, as soon as I validate their emotions, people feel relieved.”
How to support someone experiencing loss
Ironically, Ben’s not suggesting we talk to someone like him. “It almost sounds backwards but start by talking about how difficult it is to talk about grief,” he suggests. “Ask people who’ve experienced it. So often we look to professionals but actually the true lived experiences of other people can be more helpful.”
“Grief in itself isn’t a psychological problem,” he adds. “It’s a normal part of coping with loss. Of course it hurts, but it doesn’t mean someone’s psychologically damaged. Often people don’t know what to do so they encourage someone to seek therapy or counselling. That can often be quite invalidating because it’s not a psychological problem that needs treatment. What helps more is to be honest and admit ‘I don’t know what to say. This must be awful for you. I feel stuck but I’m here to listen and support you and make you a cup of tea.’”
“We should think about the individual person and what might work for them,” he continues. “We need to be open and have more conversations about death, dying and loss. Emotional healing can be so different for people that it’s not necessarily right to say, ‘This worked for me so you should do it too’. And don’t be scared to acknowledge how rubbish it all is, rather than encouraging people to look on the bright side.”
Those well-intended but misplaced lines aren’t helpful. Phrases like ‘Well, he had a good innings’ when referring to an elderly person or ‘At least you could have another baby’ to someone who’s lost a child. “People don’t do it on purpose, of course,” says Ben. “It simply comes from the awkwardness of not knowing what to say. It might make you feel better, but it doesn’t speak to someone’s loss.”
Creating space for healing
Ben practices something called Acceptance and Commitment Therapy (ACT). At the heart of this is the idea of engaging in behaviours consistent with our values. “In coping with grief and that idea of life growing around our grief,” he explains, “it’s about anything we can do to help people live a good life. It could be going to a coffee morning and chatting to people about anything but. Talking about a TV programme or the weather. It’s about having that space. That can help.”
Most of us don’t want special treatment; just the understanding that there’s space for us to talk if we want to. We all need networks, but often dynamics with others change irrevocably after loss, especially if those around us constantly tread on eggshells. “In grief we might shift communities, we might find companionship with others who have experienced loss, make new friends or seek out old ones,” Ben says. “But we all need community support for grief in some form. The people I worry about are the ones who live with this emotion in complete isolation.”
“Sometimes grief is so painful it can tear a couple apart,” he continues, “or cause tension within a family. For some, when the memory of loss is associated with a person or relationship, for their own mental wellbeing they might have to make a break because the reminder is too much. On the flip side, for others it can bring them immensely close in that unified loss. It’s very individual.”
“However, there’s a time and place to seek out expert help,” he states. “When people don’t have access to a safe space to talk about their experience, counselling or psychology can help. Having that regular, consistent space to talk about loss. And any behaviours incongruous with who someone really is can be a warning sign.”
Finding meaning in loss: sometimes there’s no answer
Even the professionals don’t have all the answers when it comes to something as complex as mitochondrial disease grief. “When people ask me why it’s happened to them, I could talk about the science, the genetic population risk and the bigger picture. Most of the time people don’t want to hear that, they just want to say how unfair it is. Being able to express those feelings may be part of the adjustment, and in my experience people just want that space.”
“I still struggle with that,” he admits. “Maybe there just isn’t any meaning in it because it’s so painful. Sometimes people are told very unhelpful things, like they’re being tested by God, and that actually makes their adjustment to the loss even harder because they can’t find meaning in it and never will.”
“And sometimes people get angry with me. They think I’m meant to make them feel better, and that’s where I struggle the most. I don’t have the answers and I can’t take their pain away. But I can provide a safe space for them to navigate their emotions. Often I’m most helpful to people when they don’t have support around them or people to hear them. For example, parents who have lost a child and can’t talk to each other because they’re both hurting so much. That’s where I can help.”
Ben considers it a privilege to be trusted with people’s experiences. “Not everyone has that privilege,” he says. “People are vulnerable and they’re trusting me with a difficult story. Of course it’s hard, but I’m lucky to have good supervision and support and ways to help my own wellbeing.”
“It’s a bit like holding a precious vase,” he reflects. “I mustn’t damage it. The first time I held one, it was pretty scary, but each time I hold a different vase I learn a bit more. It’s different every time, but by hearing people’s unique stories maybe I’ll develop a better understanding.”
At the heart of coping is creating a safe space. Whether through a supportive community or professional counselling, having a consistent outlet to share emotions is vital. This National Grief Awareness Week, if you’re seeking professional support, organisations like Child Bereavement UK and Together for Short Lives offer resources. The Lily Foundation are also available to help – you can get in touch by emailing [email protected] or calling 07947 257247.