Grief is the experience we go through when coping with loss. Most of us think of that grief as happening in the painful period after a loved one has died, and shrinking over time. “What really happens,” explains Ben, “is that we grow around our grief, and life shifts and changes constantly around it. One day someone might feel quite chipper and the next day they might feel really sad again.”
“Related to that are things like 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 anniversary is a big reminder of loss. For example, a woman who has lost a child and is pregnant with a new baby can also feel immense grief alongside that joy.”
And grief is different for everyone, no matter who they’re grieving or the circumstances of their loss. “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’, whereas someone dying suddenly overnight can be experienced as an unpredictable loss. But one isn’t better or worse than the other, it’s just that the experience is qualitatively different for the individual.”
“As a society we can tolerate the idea of older people dying more than children and young people,” 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 each relationship; it depends on someone’s coping and attachment. Rather than saying there are different types of grief, people’s experiences of grief are different based on a whole host of factors.”
It’s not just death that causes us to grieve
What many of us don’t realise is there are in fact two kinds of loss. “There’s absolute loss, when there’s a death and a funeral, and that has a process and a language we all understand,” explains Ben. “But there’s also something called ambiguous loss. That’s when we know we’re going to lose somebody, but as that person gets more poorly, they no longer represent the person we knew. You hear that term a lot in dementia care, but you see it in mito too. ‘That person is still here but they’re not the person I once knew.’ That’s a very different experience of grief, and one much less well understood by society. And it’s very constant, without the finality of death, so can be just as hard to deal with.”
“And loss doesn’t have to be about death and dying either,” he continues. “It could be about loss of sight, loss of hearing or being unable to walk anymore. It’s important to appreciate that some people could have a catastrophic reaction to these things just as much as losing a loved one.”
“Particularly with a rare condition like mito that many people haven’t heard of, we find ourselves having to explain the health condition rather than talk about how we’re feeling. That’s much more common with mito than other conditions like, say, cancer. There’s no medicine for that, it’s just about awareness. What The Lily Foundation are doing in constantly raising awareness about mito helps people to recognise that it’s a degenerative condition for many and that helps with topics like ambiguous loss.”
Particularly with a rare condition like mito... we find ourselves having to explain the health condition rather than talk about how we’re feeling.”
One emotion often associated with ambiguous loss is guilt. “A very difficult and challenging experience for loved ones is the feeling of resentment,” Ben explains. “It’s very rarely, if ever, about resenting the person themselves, but often resenting the care we have to provide, dealing with health services, benefits, or the change in our home environments. They’re not the person we married or the child we’d hoped for, and the immense guilt we feel for even thinking that is incredibly difficult. For a lot of parents, they move from being a mum or dad to a carer and that can be hard. Or when people have carers who come in, they feel immense guilt for not being the person caring for their child and feel like they’re letting their loved one down. And sometimes with mito that can be complicated by the genetic link – mothers might feel guilt if there’s the sense of a connection between their genes and passing on the condition.”
Ben describes guilt as a ‘sticky’ emotion. “Feelings like anger can be expressed and extinguished quickly,” he expands, “whereas emotions like guilt and shame hang around and are much more insidious. But what I notice a lot in my work is the bravery it takes for people to talk about the guilt or shame they feel. It takes an immense amount of trust and a feeling of safety to be able to do that. And often, as soon as I validate that their emotions are quite common or typical when experiencing difficult loss, people feel immediately more relieved.”
Don’t ask an expert – ask people who’ve experienced loss
So how do we make loss easier to deal with? Ironically, Ben’s not necessarily suggesting we talk to him! “It almost sounds backwards but start by talking about how difficult it is to talk about grief,” he suggests. “Don’t ask an expert, ask people who’ve experienced it. So often we look to professionals but actually what’s worked for other people, that true lived experience, can be more helpful.”
“It’s important to say that grief in itself isn’t a psychological problem,” he adds. “It’s a very normal part of 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, but that can be quite invalidating because it’s often not a psychological problem that needs treatment. Sometimes what can be more helpful is to be honest and simply admit ‘I don’t know what to do, 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 declares. “We need to be open and have more conversations about death and dying and loss. Grief 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 too, rather than encouraging people to try and look on the bright side.”
Those well-intended but misplaced phrases just aren’t helpful. Phrases like ‘Well, he had a good innings’ when referring to a very 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,” reflects 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.”
Give people the space to talk about their loss
Ben practices something called Acceptance and Commitment Therapy (ACT), and at the heart of this is the idea of engaging in behaviours that are consistent with our values, the things that matter most to us. “In coping with grief and that idea of life growing around our grief rather than our grief changing in size,” he explains, “it’s about anything we can do to help people live a good life every day. It could be going to a coffee morning and chatting to people about anything but death and dying and loss. Talking about the telly or the weather. It’s just about having that space. That can be really helpful.”
Most of us just want to be treated normally, but with the understanding that there’s space for us to talk if we want to. We all need some kind of community around us, but often dynamics with other people change irrevocably after loss, especially if those around us are constantly treading 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 that community in some form. The people I worry about are the ones who sit with this emotion in complete isolation. We’re human beings and we all need networks.”
“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 the loss is associated with a person or relationship, for their own mental wellbeing they might have to move away from that relationship because the reminder is too much for them. On the flip side, for others it can bring them immensely close together 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 could be helpful. Having that regular, consistent space to talk about loss. And any behaviours incongruous with who someone really is can be a warning sign.”
Sometimes there isn’t an answer or a reason
Even the professionals don’t have all the answers when it comes to something as complex as mito. “When people ask me why it’s happened to them, I could talk about the science and the genetic population risk and the bigger picture but most of the time people don’t want to hear that, they just want to say it’s not fair. Being able to express those feelings may be part of the adjustment and coping, and in my experience people just want that space.”
“And in all the work I do, 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 more difficult because they can’t find meaning in it and they 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 because 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 that support around them or people who can hear them. For example, parents who have lost a child and one can’t talk to the other because they’re both hurting so much. That’s where I can help.”
We need to be open and have more conversations about death and dying and loss. Grief can be so different for people...”
One of the things Ben likes most about his job is the unique privilege of being trusted with people’s experiences. “Not everyone has that privilege,” he says. “People are very vulnerable and they’re trusting me with a very difficult story and trusting me to hold that for them. Of course it’s hard, but I’m lucky to have good supervision and support and ways to help my own wellbeing too.”
“It’s a bit like holding a precious vase,” he reflects. “I mustn’t damage it. The first time I held it, 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 of how to hold the vase.”
Sadly, there isn’t a magic wand we can wave to ‘fix’ our grief, but let’s get talking about it to try and ensure it becomes an easier topic for all of us to deal with. We hope that Ben’s advice can bring comfort to those in the mito community and beyond who have been affected by loss, but if you think you might benefit from professional counselling, support is available from charities like Child Bereavement UK and Together for Short Lives, or you can get in touch with The Lily Foundation by emailing [email protected] or calling 07947 257247.