What Can Help

We need resources to help us in the grief process, resources help balance the challenges & vulnerabilities that arise.  Two really important inner resources are compassion & being able to regulate the nervous system, I think these are foundational in many things including in grief & loss.  Other resources include the process of learning itself, the support of others, perspective taking, being able to connect to safety and trust, and awareness (mindfulness).  If someone is under-resourced they are more likely to need some support from a counsellor or psychologist.  Also this can be needed, for example, if the grief triggers into previous traumatic experiences, which I think it often does, especially if someone is under-resourced and it’s still needed sometimes even if someone is well resourced too.  It’s important to recognise when help is needed and also remember that there is no right or wrong way to grieve.

One way to identify what could be supportive for you to nurture is to ask yourself:

What’s challenging for you?

What would help if it was more present in your mind? (for example, compassion, love)

What would it help to connect to in your body? (for example, love, kindness)

You can then nurture what you identify would be helpful, the more we practice and work with something the easier to is to access as it becomes more hard wired.  There may be a time when growing what’s nurturing creates more sadness, it’s important we listen to the not yet and reassure ourselves it’s ok to feel these things and see if it feels ok to continue the practice.  A practice where you can nurture what you identify as supportive could be one like this one, to nurture what’s supportive in the body:

https://soundcloud.com/user-103516027/nurturing-whats-supportive?si=2ef7028b5d334d2e8f6860c9cbfcfebf&utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

Our self-talk matters, as mentioned in part one of the blog our self-critic can get over active and we take the losses and grief and turn them into a big stick to beat ourselves up with, when this happens the compassionate self can help.  Let’s look at a couple of examples and some compassionate reframes: “I need to stop wallowing and get on with living life”, perhaps you could notice how this statement lands in your body and what state of mind it’s associated with?  The self-critic’s view is not very helpful and doesn’t acknowledge the impact, that it’s normal to not feel ok and settled after a loss/losses for a while (how ever long that while is).  Here’s a compassionate reframe example, “my grief reminds me of how much I’ve lost, it’s completely understandable that I’ve been struggling and how I’m feeling is normal, everyone grieves and experiences losses and it’s not easy to navigate this.”  How does that land with you?  Here’s an example that combines guilt with the self-critic, “if I had worked harder to get rid of this pain I wouldn’t have lost my ability to walk further than I can, do the garden and the housework, I really should have stopped it happening, I just wasn’t strong enough to do it.”  Wow that’s harsh isn’t it, how does this land with you?  Let’s look at a compassionate reframe here, “this has been really hard to manage and I did my best to maintain my function and do what I needed to.  I had no control over how things have turned out and I’m doing my best to find what’s helpful for me.”  How does this land in your body, what about your mind?

Being aware of where our attention is automatically resting is helpful, pain and losses take our attention automatically and become a default until we become aware and start to change this habit (it doesn’t mean ignoring the pain and losses).  We have tricky brains in that they are wired for protection and survival and so have a bias towards things that are perceived as a threat.  If, for example, we have our attention in anger, anxiety, fatigue or pain all the time it becomes a habit and what we are growing.  Also, when we do this we are functioning from our sympathetic nervous system way too much which impacts us in many ways.  Being mindful of where our attention is, acknowledging what is present and learning about it, then unhooking from this and choosing a more helpful place for our attention is part of creating space around pain, fatigue and associated losses.  In this way we can learn from what’s showing up and deepen our awareness without being hijacked by it.

When I did Rick Hanson’s Grief and Loss course recently (linked at the end of this blog) he mentioned that Peter Levine talks about being like a pendulum swinging into the intensity and discomfort and back out.  The rhythm of the pendulum and how long it stays with the discomfort can be whatever is right for you, perhaps this could be helpful in being with the losses and grief and how it’s showing up without feeling overwhelmed.  Over time we can swing into the grief and discomfort and stay a little longer if it’s helpful.  If someone can’t create space in their pain and time and time again they get pulled into it, or maybe even are stuck in it, reaching out for help may be needed.

Dr Rick Hanson also talks about even as the storm passes through the mind for your own grieving there is a place inside, a knowing that a small part isn’t swept away and is alright, even if it’s a tenth of 1%.  Can you notice this?  This basic alrightness as he calls it can be a place of refuge, a soothing place to rest and grow.  Keeping returning to it and building this indestructible, trustworthy, reliable, unshakable core, as Rick says, is helpful.

It’s important to acknowledge the losses through pain, fatigue and various long-term health conditions, honour them and when we are ready create something meaningful, something that’s helpful for ourselves and others.  A ritual can be part of this, for example, drawing something, creating a memory scrapbox or memory box, lighting a candle, planting a tree or other plant, writing a letter, getting a group of people together to acknowledge & honour the person that once was with compassion and love.

Here’s a list of other things that help, I’m not talking about them all else this blog will be way too long (this is not an exhaustive list, there are many more things):

The post Grief & Loss in Persistent Pain & Other Health Conditions (Part Two) appeared first on Unity Physiotherapy and Wellbeing.

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 conditions associated with persistent pain and fatigue, including fibromyalgia, ME/CFS and long covid, and I feel that the associated grief and losses aren’t talked about enough.  I am not writing this as a psychological clinician instead as an integrative somatic practitioner and physiotherapist who has done additional related trainings, supported people with losses and grief resulting from various long-term health conditions, and through my lived experience of many losses related to ME/CFS & PoTS as well as other losses.  I’ve supported people by holding a compassionate 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 death losses, 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 and/or fatigue commonly include losses of: independence, physical function, joy and playfulness, finances/financial stability, relationships, roles, identity, trust, self-confidence, belonging, ability to do what’s needed, work, and being able to engage in hobbies & activities.  Often there are many layers with losses and things can be complex.

The intangibility of some losses can make grief feel isolating and it 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/or fatigue and other symptoms, like some losses pain & fatigue lack tangibility, so this can be a bit of a double whammy with the isolation aspect.  It’s important to connect to the bigger picture view, that pain, fatigue, 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, it can bring a sense of relief and having a sense of connection can feel soothing and healing.  Also holding our losses in the bigger container of common humanity rather than in a small container can help things feel less overwhelming.

There is what is sometimes referred to as primary and secondary suffering with pain and fatigue, for example, the primary suffering is the pain/fatigue 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 calls this the first and second darts.

Those close to the person living with persistent pain and/or fatigue, or other long-term health issues, are also often grieving the loss of the person that once was.  This can be forgotten, it’s important that it’s acknowledged that the people close to the person living with the health condition(s) are also grieving the person they knew.

Grief is commonly influenced by unhelpful social messages, it’s important that 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.

Losses trigger our threat system, initially the sympathetic nervous system is more activated, and many different emotions and feelings can be present.  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 commonly are the critical self and the anxious self.  It’s 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, fatigue 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 and worry.  Sometimes people need to work with a psychological therapist to explore this, this is partly related to 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.

Grief generally never fully goes away but we grow around it, which means there is more space for it, it shrinks a bit and it’s not so often present.  Sometimes when grief shows up again there may be something to acknowledge, notice & allow to flow through as we deepen awareness.  When this happens sometimes there is a message/some learning in it and we may decide to make some changes.  When grief surfaces again it could be seen as an opportunity to understand things even more deeply, let go of anything that’s not serving us, make any changes that are supportive for us/ 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 ).

The post Grief & Loss in Persistent Pain & Other Health Conditions (Part One) appeared first on Unity Physiotherapy and Wellbeing.