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.  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 disconnecting from the world around us.  Part of changing pain, healing and living well needs compassionate reconnection to ourselves, learning to trust and love our bodies again, along with reaching out and reconnecting with others.

People commonly say to me ‘people think I am ok as I look normal’ or simply ‘I look ok, so people think I am ok.’  Feelings of looking ok and not being understood can be a source of distress and disconnecting from those around us.  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.   Sometimes I use myself as an example and ask if they think I am in pain, usually the answer from them is no and the actual answer is yes.   A patient once said to me, towards the end of their initial assessment, their goal was to be like me and not show pain (which I sometimes do).  This is not about ignoring or avoiding the pain, we had a brief discussion about the threat system and the body and breath staying calm even in perceived threat to help create a sense of safety and calm systems down.  What we embody is part of our reality and how we are feeling, the way we show up can be part of our threat system or reinforce safety.   I’ve lived with pain a long time, how I show up (what I am embodying) with pain is mainly in a way that represents safety to the nervous system, or at least that’s the aim (it’s not always possible!).  This has helped change pain and has been part of me learning to live well with it.   Doing this does not mean things are plain sailing nor can I always embody what’s helpful and aligned with how intend to show up each day because nothing is possible all of the time.  Also it’s not easy living well with pain and, living with pain or not, our threat systems are constantly being stimulated and like most/all people I have times when I am in too much of my threat system which restricts connection and being able to take helpful values aligned action.

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 and their culture, their previous experiences of sharing how they are really feeling and how safe they feel in the context.  We need compassion and courage to share our distress and to be able to be fully present and hear what’s being said, to hold that safe space.  Judgement is part of being human and how our brains our wired, judgement can help to keep us safe and it can over protect us too.

One consequence of the distress (and contributor to it) of the invisibility of pain is stopping engaging in what matters most, disconnecting from our values and what’s meaningful.  Many people tell me they have stopped socialising as much or altogether as they don’t feel people understand, they feel that they are being negatively judged as they ‘look ok’ and that they ‘should’ be doing more.  Disconnecting and feeling isolated increases pain and can contribute to further secondary suffering (e.g., anxiety, depression, guilt, isolation, self-criticism).  I sometimes notice thoughts myself around ‘negative’ judgment, for example ‘they won’t understand why….maybe I should…’  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.   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 perception of pain and makes pain more of a focus, it takes centre stage and what’s most meaningful (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.

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 brain 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.

Being part of a social group is part of our basic needs, it’s how we have evolved as humans, so it’s no surprise that when our sense of belonging changes our threat system is on hyper-alert watching out for the things that may put us at risk and things that wouldn’t be a risk start to be seen that way, like the feathers blowing in the wind, and we start to disconnect more from those around us.  The irony here is that when our protect system is on hyper-drive our self-critical self, one of the versions of ourselves (we all have multiple selves), commonly shows up here and the threat system is then stimulated even more.  This becomes a vicious cycle until we explore different aspects and learn to stop the cycle.  Belonging is linked to perceptions, expectations and social norms.  My favourite work on belonging is that by Brené Brown, if you haven’t read her work I would recommend having a look.

Pain doesn’t have objectification and so is 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 the invisibility of pain, disconnecting from ourselves and others 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 by change the myths in society and cultivating a compassionate 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 and commonly not liking or loving our body and what we feel is more pain and we may withdraw further from what matters to us.  It is common for people to have lost trust in their body and/or not like their body and to have disconnected from their body.  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, our world in general by remembering that the threat system is on hyper-drive, the secondary suffering increases, and we stop engaging in what’s most meaningful in life.   Some key points in this are:

• We feel like we don’t belong and feel disconnected from others
• People can be surrounded by others and yet feel alone if they don’t feel people understand or want to understand
• We feel ‘negatively’ judged by others from our perceptions of what they are thinking, or analysis of things that have been said
• We start criticising ourselves more and feel like it’s our fault
• Our threat system is on hyper-drive
• We withdraw from what matters most
• We disconnect from ourselves and connect in a certain way (commonly through self-criticism)
• We disconnect from our bodies and lose trust
• We get hooked in things like self-criticism, guilt, frustration, and anxiety – our threat systems become more dominant.

When we become aware of the actions we are taking, understand the feelings and emotions underneath in a compassionate way we can see the different choice points and take the most helpful action.

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 our 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 also helps the person living with pain understand things more and often be able to connect some more dots.  Creativity and explaining pain includes metaphors, telling our stories, and drawing/art
• Changing the myths in society about pain – there are many pain specialist clinicians & patient advocates (people who’ve learnt to 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 (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 bodies and around us
• Reconnecting to the body in a way that builds trust and changes how it’s seen (loved again).

There are many more tips, those above are ones I feel, from my own and clinical experience, to be some of the really important ones.  Remember we can’t judge what someone is going through as only they experience it, we can do our best to compassionately understand, walk alongside them and help if that’s what they would like us to do.  We can help to change the invisibility of pain by talking about pain, sharing our stories of lived experiences, reading and sharing evidenced based information, and nurturing compassion.  Compassion helps us turn towards what’s tricky or 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 know many have been there and change is possible by reconnecting to yourself and those around you, please reach out to someone, this could be a friend, colleague, family member, healthcare or other relevant professional.