This blog is about grief and losses in persistent pain (also known as chronic pain) and other long-term health conditions. It’s important to be aware that reading this may be triggering for some people, please choose if reading it is ok for you.
The suffering associated with losses and grief affects us all many times throughout our lives, losses and grief are part of the human experience and living with love and an open heart. One thing that I feel is important to mention at the start is that grief has no right or wrong way, no specific length of time, it’s individual.
I am writing this blog as I’m passionate about helping people with persistent pain and other health conditions and I feel that the associated grief and loss isn’t talked about enough. I am not writing this a psychological clinician instead as a coach and physiotherapist who has done additional related trainings, supported people with losses and grief through persistent pain, and through my lived experience of many losses related to health and other losses. I’ve supported people by holding space for the grief, acknowledging it and allowing people to process it in whatever way they needed to (alongside a psychological clinician when needed).
There are many losses in life, including deaths, losses of relationships, losses of role, physical and mental losses, climate related losses, societal losses, loss of trust and confidence in ourselves, loss of hopes and dreams, right down to the loss of each moment as we never get the same moment back. Losses through living with pain and other health conditions can be sudden, or they can appear gradually, they commonly affect many domains of life and can be completely life changing. Many things need consideration in living with losses and grief related to health conditions, non-finite losses or living losses as they are also called, I will mention some of the important aspects in this blog.
Grief & Our Assumptive World
We all create what is known as our assumptive world, a lot of this develops when we are very young, which is part of our attachment system. The assumptive world includes how we see ourselves and others, how we feel safe in the world, how we feel that we fit into social systems and how we think the world should work. It forms a foundation of how we navigate the world feeling safe and ok. Sometimes things bump up against the assumptive world and we adjust it, other times it’s more affected and it can be shattered. When this happens we often no longer know who we are, we struggle to know how to be in the world as our old way of being no longer works/is no longer possible and the world no longer makes sense to us. I think this happens more than is recognised in persistent pain and other health conditions when losses impact multiple domains of life.
When multiple losses wipe out the world we once knew it results in a state of disequilibrium. This often feels a very vulnerable place to be and we can feel out of control, so a sense of agency is important. Here’s an analogy I developed, maybe you can relate: A small rowing boat was out at sea, it had been impacted by the many storms, it couldn’t orientate to where it was anymore and it had lost its trust in navigating the sea’s ever changing environment. It had taken on too much water, this happened so quickly it was overwhelming, consequently it started to sink. After a while it was possible to work out how to offload some of the water and some dolphins came to help support the boat whilst it brought itself to a state of floating once more.
Once floating it had no idea how to get to shore again even though it could see the glimmer of the lighthouse. The dolphins were still present providing a sense of safety and comfort whilst the boat rested and floated a while. It had decided to simply float whilst it reflected on its journey, learning more about the current, the changing waters and the storms. It began to feel bigger and a little more spacious and ready to start to travel the tricky waters to the shore. The boat turned towards the direction that the lighthouse glimmer appeared to be arising from, slowly rowing and pausing, rowing and pausing, checking in on the water and the changing tide. From time to time it let go of a little more water that came on board, the dolphins accompanied the boat as it travelled which was soothing and provided a sense of safety as it learned to trust and navigate again. The boat had the choice of when pausing was needed and when to change its speed and it kept checking in with what felt right for it. It became aware of the importance of spaciousness as it travelled and being able to see the wider view once more, it became aware of distant islands and much more that it could see on the horizon and closer by. It felt connected to all around and the wider parts of the sea and sky that it couldn’t see, it was soothing to feel connected to all of this. This was the start of re-learning about the world and the journey towards creating something meaningful for the boat.
Some of the aspects for consideration with grief and loss in persistent pain & other health conditions
There are tangible losses, things that can be more easily seen, and intangible losses that are not so easily seen and expressed. Intangible losses include: a change in identity, loss of purpose, loss of trust and loss of safe connection to the self and others. Losses when struggling with persistent pain commonly include: loss of independence, loss of physical function, loss of joy and play, loss of finances/financial stability, loss of relationships, losses of role, loss of identity, loss of trust (in the self and others), loss of self-confidence, loss of belonging and feeling isolated, loss of ability to do what’s needed, loss of work, loss of being able to engage in hobbies and activities once enjoyed. Often there are commonly many layers with losses and things are complex.
The intangibility of some losses can make grief feel isolating and links into a sense of feeling helpless and hopeless, these are linked to suicide risk which is one reason why keeping connected to a sense of community is important. People also often feel isolated when living with pain and pain itself lacks tangibility, so it can be a bit of a double whammy with the isolation aspect. It’s important to connect to the bigger picture view, that pain, grief, loss and suffering are part of being part of being human and many people feel isolated sometimes. Acknowledging others feel like this too and having a community to connect to is important and can bring a sense of relief, it can be soothing and a sense of connection can feel healing. Also holding our losses in the bigger container of common humanity rather than in a small container can help things feel less overwhelming.
As with pain itself there is primary and secondary suffering. With pain, for example, the primary suffering is the pain and then we have the secondary suffering which commonly incudes anxiety, frustration, anger, guilt, self-criticism, and grief. With losses the primary suffering is the loss and grief, the secondary is, for example, guilt, anxiety, rumination, anger and frustration. Tara Brach talks about this as first and second arrows, Dr Rick Hanson as first and second darts.
Those close to the person living with persistent pain, or another health condition, are also grieving the loss of the person that once was. This can be forgotten, it’s important it is acknowledged that the people close to the person living with pain are also grieving the person they knew.
Grief is commonly influenced by unhelpful social messages, it’s important we do what feels right to us with grief and not what societal expectations and norms might dictate. In society there are many harmful messages for example: pick yourself up and get on with it, you need to try harder, that it’s strong to suppress and strictly manage emotions, and that being self-reliant and fiercely independent is the ideal. None of these are true! There are also deep rooted, messages in society around expectations of a fix or cure which puts pressure on people to be ok and on others try and fix things, rather than simply being with the grief and allowing it to be present exactly as it is.
Loss triggers our threat system, the sympathetic nervous system, many different emotions and feelings and parts of ourselves associated with our threat system show up and some stay a while, and our protection mechanisms are generally heightened. There can be numbness, a lack of emotions, and an emptiness too. Two of the protective parts that show up are the critical self and the anxious self, it is completely understandable that these parts of us show up, especially as uncertainty can be tricky at the best of times and the unpredictability of pain and other health conditions add into this. Anxiety may also have been present before the grief and losses too and it can be a strong undercurrent sometimes in grief, it can be woven through the grief too.
It can feel like we have no control and as a result we end up over controlling things to try and manage the uncertainty. There are common questions I have been asked, and I’ve asked myself too, including: what if I don’t get better? What if I get worse? Will I be able to handle it? These questions are coming from fear of uncertainty usually, and often the anxious self has all sorts of responses that aren’t particularly supportive in the long-term. We need to acknowledge this part of ourselves and any others showing up that are needing to be seen, heard and understood and bring in our compassionate self to calm the protective parts down and create more helpful guidance and support.
Through unhelpful self-talk, perhaps combined with previous experiences and beliefs, we may also have attached unhelpful meanings to some of the losses, for example that we are not good enough, or we are weak, or we may be carrying unnecessary guilt. It can be helpful to explore what meanings we have attached to things, seeing if they are true or helpful (likely neither) and creating a compassionate reframe.
Also there can be worry and rumination linked to the losses, this is usually serving a protective function, like the anxious self and critical self do. When we look under rumination there may be a lot of fear, anxiety, sadness, anger, shame or other protective feelings and emotions. It’s really common for people who have a lot of losses due to pain and other health conditions to have a fear of if they will manage in the future, and even if they will get worse and the potential impacts of this happening. In my experience of working with people with pain and fatigue it is commonly fear, anxiety and shame that lie underneath the rumination. Sometimes we need to work with a therapist to explore this, partly depending on our previous experiences and internal resources.
When someone dies we have a ritual, a few of the various important things about this include recognising and honouring the loss and bringing a community together, people united in loss with love and care for each other usually. In non-death losses we don’t have a ritual and this is something that can be helpful.
We need to make sense of things, acknowledge and honour what’s been lost and what we miss. Sometimes we need to let go of things and old ways of being, to then move into re-learning and compassionately rebuilding a new assumptive world that maintains safety. Rebuilding creates meaning, this is different to making sense of everything, it’s the what now? It could be seen as building and growing something that’s helpful for the self and others from what’s been lost. It’s said to be deep work that goes right to our core, maybe you have been there and can relate to the depth, I can.
It’s not about coming to an end of dealing with the loss, although we can make peace with it and create something meaningful it often gets retriggered. For example, say for a few years it’s not at the forefront of our minds, then it gets triggered & there’s more that we maybe need to acknowledge, notice & allow to flow through as we deepen awareness and perhaps make some changes. What arises is an opportunity to understand things even more deeply, let go of anything that’s not serving us and develop more resources for navigating the tricky times.
Here’s the link to part two which covers some of the things that can help, there is also a short summary and some resources that may be helpful https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-two/. Please remember grief has no right or wrong way and to ask for support if you need it.
(Some images are the authors own, others are as follows from shutterstock: heart in hands by SewCream , dandelion by JanBusson; from stock.adobe.com: man in boat by fran_kie, words on clipboard by Syahrir ).