Do you feel isolated with pain?
Have you disconnected from yourself and others?
Have you lost trust in your body/yourself?

These things are common when struggling with pain and can be changed.  We are going to explore the invisibility of pain and the associated disconnection and isolation a little in this blog.

The invisibility of pain is linked to feeling isolated and disconnected from others, disconnected from ourselves (commonly disconnecting from our body and not trusting/loving our body) and our world in general and not feeling understood.  Isolation can show up in many ways, for example feeling isolated from work colleagues and not understood/or feeling isolated from friends and family, stopping meaningful activates and disengaging from activities & withdrawing. Part of changing pain, healing and thriving needs a number of things including compassionate reconnection to ourselves, learning to trust and love our bodies again, along with reaching out and reconnecting with others.

Something I often say to people is that you can’t tell by looking at someone how they are feeling, this includes how much pain they are in or even whether they are in pain at all.   Yes, things like, people’s facial expressions, body posture, voice tone and behaviour give us an idea how they are, yet we really don’t know and won’t understand unless we ask them and really listen.   When we ask someone how they are the answer we get will depend on a number of things, including their perceptions of whether they will be fully heard and how they will be judged, what’s expected in society & their culture, their previous experiences of sharing how they are really feeling & how safe they feel in the context. Judgement is part of being human and how our brains our wired, judgement can help to keep us safe & can over protect us too.  We need compassion and courage to both share our distress/how we are really feeling and to be able to be fully present and hear what’s being said.

One consequence of the distress of the invisibility of pain, and contributor to it, is stopping engaging in what matters most, disconnecting from others, our values and what’s meaningful.  Many people tell me they have stopped socialising as much as they used to, or altogether as they don’t feel people understand, they feel that they are being negatively judged as they ‘look ok’ and feel like it is expected that they ‘should’ be doing more.  Disconnecting and feeling isolated commonly increases pain and can contribute to further secondary suffering (e.g., anxiety, depression, shame, guilt, isolation, self-criticism).  Certain thoughts are common, including ‘they won’t understand why….maybe I should…I’m not good enough… I am rubbish at pacing as I still can’t…’  These sorts of thoughts are common and part of being human, yet getting hooked in them and their associated feelings is part of the secondary suffering, we can learn to notice these thoughts, step back from them a little & then choose what’s helpful (this is one of the ways that mindfulness & compassion can be helpful).   Becoming hooked in some of the many threat based thoughts, emotions and feelings that go alongside isolation and disconnection, for example, self-criticism, anxiety, guilt frustration and shame are all part of secondary suffering.

Stopping meaningful activities and disconnecting from others increases the perceived need of the nervous system for protection, it makes pain more of a focus & it takes centre stage.  This means that what’s most meaningful (usually connected to our values) is backstage, this in itself increases the pain volume and the secondary suffering.  People also stop or reduce meaningful activities for other reasons like fear of a flare-up, although this is another discussion it’s looped into the isolation & the invisibility of pain too.  Also by doing less & less, when we disconnect & withdraw, we lose tolerance for doing a variety of activities, this creates another cycle in pain.  The great news is one we are aware of the cycles relevant to our experience we can start to change them.

Our human minds are tricky in that they have been wired to protect us, so watching out for things that put our basic needs at risk is a priority that’s happening all the time to a degree and depends on our current context and previous experiences.  This is helpful until the parts of our nervous system that do this end up on hyper-alert, which means for example a feather blowing in the wind towards us could be perceived as something that could be harmful to us, so more like a rock than a light feather.  This happens for many reasons including when we are struggling with pain and have become isolated and disconnected from ourselves and others, combined with our previous experiences.

Belonging is linked to perceptions, expectations and social norms.  Being part of a social group is part of our basic needs, it’s how we have evolved as humans, so it’s perhaps no surprise that when our sense of belonging changes it contributes to our threat system being on hyper-alert.  One consequence being things that previously wouldn’t have been perceived as a risk start to be automatically seen that way and we start to disconnect more from the world, those around us and ourselves.  The irony here is that when our threat system is on hyper-drive our self-critical self, one of the versions of ourselves (we all have multiple selves), commonly shows up more often which also increases threat system sensitivity.  This becomes a vicious cycle until we explore different aspects and learn to stop the cycle.    If you’re interested in learning more about belonging there are various greta resources including Brené Brown’s work.

Pain doesn’t have objectification which is part of what makes it difficult to express, this along with the many myths about pain that exist in society, perceptions of being negatively judged and a decreased sense of belonging are all part of what can contribute to us disconnecting from ourselves and others, going quiet & withdrawing, and feeling isolated.  Lacking objectification makes pain tough to understand and explain to others, yet it is possible with understanding of what helps us to explain pain and also by changing the myths in society and cultivating a compassionate trauma-informed society.

(picture modified from Sergey Nivens Shutterstock)

Invisibility of pain and isolation can contribute to us blaming our bodies/ourselves, although this is a natural reaction over time it contributes to a lack of trust in our body and not liking/loving our body & increased shame.  When we disconnect from our body in a loving way we only see it through the lenses of pain, shame and criticism which increase the pain volume and the secondary suffering.

We could summarise what happens when we feel isolated and have disconnected from ourselves & others and our world in general by remembering that the threat system is on hyper-drive, shame is commonly present, the secondary suffering increases, and we stop engaging in what’s most meaningful in life.   Some of the important points so far:

• We feel like we don’t belong and feel disconnected from others which contributes to self-criticism & pain & causes us to disconnect & withdraw more
• People can be surrounded by others and yet feel alone if they don’t feel people understand
• We feel ‘negatively’ judged by others from our perceptions of what they are thinking, or analysis of things that have been said, previous experiences & beliefs
• Our threat system being on hyper-drive has many consequences & contributes, including when we are lacking a sense of belonging, feeling disconnected/go quiet/withdraw/isolate ourselves
• We disconnect from ourselves and connect in a certain way (commonly through self-criticism), we lose trust in out body/self in general
• We get hooked up in things like self-criticism, guilt, frustration, and anxiety – our threat systems becomes more dominant, the nervous system is dysregulated more often.  These are all part of secondary suffering.

When we become aware of the actions we are taking and understand the feelings and emotions underneath our behaviour in a compassionate way we can see the different choice points and then take different action, wise action (from our compassionate self, alined with relieving suffering & aligned with our values).

What can help?

• Break the stigma and keep talking to others rather than hiding and pushing how we are feeling away.  This takes courage and compassion from those sharing and those listening
• We can keep sharing stories of living with persistent pain to help those living with and without persistent pain to understand pain.  I share stories in clinic every day, it’s what we all relate to and helps us make sense of things
• Creativity can be used to help explain pain to family, friends and healthcare professionals. It can also help the person living with pain understand things more and often helps them to connect some more dots.  Creativity and explaining pain includes metaphors, using stories, and drawing/art
• Changing the myths in society about pain – there are many pain specialist clinicians & patient advocates (people who’ve learnt to change/live well with pain) working to do this
• Reading & sharing evidenced based literature on pain, check out the resources section on the Unity Physiotherapy & Wellbeing website for a list of some resources
• People living with pain can get involved in healthcare conferences, communicating with healthcare professionals on social media, and research, this is already happening
• Self-compassion practices.  These and compassionate mind training/other compassion practices (self-compassion is part of this) are being used more & more in pain management.  Compassion has been shown to help in many ways including decreasing self-criticism, guilt, shame & stress.  It’s also been shown to increase wellbeing in general and it connects us in a supportive way to ourselves and others
• Being aware of our self-talk and which version of ourselves is showing up (for example our compassionate self or our self-critical self) and changing this to be supportive and nurturing
• Creating a sense of safety within the body and around us
• Reconnecting to the body in a way that builds trust & compassion changes many things including that it can improve nervous system regulation & decreases secondary suffering (expressing gratitude/appreciation for our body can help with this, as well as compassion & trust practices).

There are many more practices/strategies that can help.

Remember we can’t judge what someone is going through by what they look like, or how they seem, and only they are experiencing it (there are similarities in people’s experiences of living with persistent pain).  We can do our best to be curious & compassionately understand, walk alongside them and explore helping in some way if that’s what they would like us to do.  We can help to change the invisibility of pain by talking about pain, sharing stories of lived experiences, reading and sharing evidenced based information, and nurturing compassion.  Compassion & curiosity help us turn towards what’s tricky/the distress, to share what feels difficult, to take the action that’s aligned with our values even if there are lots of tricky things that show up (we can overcome the blocks), it helps us stay connected to ourselves and others in a supportive way.  If you’re feeling isolated with pain and/or not understood know that many people have been there and change is possible, including through regulating your nervous system, reconnecting to yourself in a compassionate way and connecting to nature, pets & those around you.  If you are struggling please reach out to someone, this could be a friend, colleague, family member, persistent pain specialist, or other healthcare professional/relevant professional.