Dear Jo - I am grateful for this excellent and "powerful" article. I will share it far and wide.
Poet David Whyte wrote: “Pain’s beautiful humiliations make us naturally humble and force us to put aside the guise of pretense. In real pain we have no other choice but to learn to ask for help and on a daily basis. In real pain we often have nothing to give back other than our own gratitude”. Does this reflect what actually happens in real life? I think it is "hit or miss".
At the Australian Pain Society's ASM this year, I presented on vulnerability and pain in a topical session with some excellent ladies. Reading your article, it seems that what you have experienced as a person with chronic pain + pain advocate is “more than normal vulnerability.”
This is how I see the vulnerability landscape in the pain setting:
*"inherent vulnerability to pain" - sources of vulnerability that are inherent to the human condition. They arise from our embodiment, the human need for support and protection, and the impact of trauma or persistent noxious experiences on our quality of life.
*"situational vulnerability to pain" is context-specific. It is caused or exacerbated by the particular situation of a person or social group. It can be short term, intermittent, or enduring (e.g., the specific pain outcomes of people without a visa detained in closed immigration detention facilities).
*Finally, some responses to pain may exacerbate existing vulnerabilities to pain (above) or generate new vulnerabilities. These are "pathogenic vulnerabilities to pain". This source is “pathogenic” because it is generated through dysfunctional relationships based on disrespect, prejudice, or abuse, or by socio-political situations characterised by oppression, injustice, persecution, or political violence.
These vulnerabilities can overlap.
Would it be true to say that you have been targeted more by "pathogenic vulnerability"?
Hi Simon, it's so wonderful to see you here! Thanks so much for your kind words and for sharing your thoughts here, and for introducing me to these terms/concepts, as I am not at all familiar with them! If you have any suggested references so I could learn more, I'd much appreciate it.
I would say that what you've described as pathogenic vulnerability is aligned with many of the issues I discuss related to injustice, racism, structural violence, etc. I'd love to learn more about it, though, because I struggle with the term pathogenic, and the characterization of it being 'dysfunctional relationships'. Relationship implies to me more of a two-way street, where this seems to be referring more to power imbalances, power abuses, and power over certain people.
Very interesting concepts to think about and would love to explore them a bit more deeply! Thanks so much for sharing. Your presentaiton at the APS ASM sounds incredible! Wish I had been there and hope our real life paths meet soon :)
Thanks for writing as always Jo. I like to think that true person centred care is how mutual power is harnessed for the greater good.
Much like green washing is everywhere in regards to the environment, I think the same is true for person centred care. Therapists often seem to think they can sprinkle it on top of THEIR approach rather than acknowledging that the person at the centre is far more important than them and being ok with this so leaving their ego at the door.
People like you Jo, brave enough to honestly express their lived experience of what I try to help with are so so valuable because it helps me do a better job of understanding and keeping you at the centre.
Thanks so much, Steven. Always love to see your comments! I agree that true person-centered care involves sharing power. That can be a really hard thing. It goes against what most health professionals are taught where paternalism and power over is the norm. I'm so grateful to all the people, like yourself, who are challenging those norms.
After so many years of kicking open doors, I was so happy just to be invited to a seat at the table. I too often made the mistake, though, of seeing the invitation as acceptance and respect - an ivitation for meaningful discussion and collaboration. Invitation does not equal inclusion!
The more I work with true collaborators and power-sharers, the more I see what true partnership and inclusion looks like, the more quickly I can see when it is just lip service being paid to person-centeredness now. When it's just the sprinkle on top of what's always been done! Both in care and in advocacy.
There's still a lot of tokenism, and a lot of pity that is seen as respect for people with pain, like were just a bunch of ignorant unfortunates who just need to be told what to do to make our lives better, rather than as worthy people in our own right with valuable knowledge, expertise, insights, and guidance to share.
The more we can all come together and share expertise, and share power, the better things will be for all of us, no matter how we identify in the 'pain space', be we people with pain, advocates, clinicians, administrators, educators, researchers - whatever. And so many of us carry more than one of those identities! Our shared humanity and our common goal of better undrestanding pain and what to do about can unite us and foster meaningful collaboration and co-creation that leads to a revolution in on we understand and treat pain, and people with pain.
Thanks for seeing and hearing me my friend! And for harnessing that mutual power for good :) Appreciate you so much. xx
Oh my god I LOVE this post!!! I especially love this quote you share with us:
"Speak up. Speak out. Get in the way. Get in good trouble, necessary trouble…"John Lewis
Good trouble.
I really relate to the part of your blog about "just being happy to be here" and "put up to get a leg up" is sort of what I was taught. That was the feminism that I was taught, to sort shimmy up to power,but its also what I have come to learn is damaging in society. Because when we are close to power, but have no power, we might start to be territorial over our spaces. This is what I am learning from so many other activists and social scientists, white cis-woman feminism is exclusionary because it is power given, not power taken. A kind of 'gratefulness' exists that is problematic and harmful.
Thank you for sharing your experiences and ythe pieces that help you make sense of that and move forwards. I've found Ren's work to be so deeply moving too :)
It seems to me that community, honesty and vulnerability are the antidote to the ignorance, wretchedness and violence in our society right now. Its hard to hate someone you embrace.
Thank you so much for this wonderful comment, Laura! And for introducing me to Ren. I am still in the rabbit hole! I still can't quite articulate what he and his work have meant to me since you introduced me to Hi Ren on Pain Geeks. It's more a lived experience than a cognitive one!
Between the Ren rabbit hole and so many things that have happened in the last few weeks with folks within positions of power who clearly do not value our contributions, I am finally starting to see those threads and through-lines of the meta-narratives and dominant discourses. I'm finally starting to see the water we swim in. Now it's a matter of weaving them into a coherent story so I can find ways to navigate those waters and act on what I see in meaningful ways.
That 'happy to be here' gratefulness is so problematic and harmful. I know I did real harm to other woman when I was a firefighter because I wanted to be the 'best one' of us. The exceptional one. You nailed it with that territorial comment when we're close to power, but have no power ourselves. We fight to protect the scraps we've been given - and are grateful for the scraps - rather than fighting for what is just and right. We buy into the competition narrative and that we need to crush others to get ahead, which only leads us to crush each other and prevents us from coming together in community, vulnerability, honesty. You said it beautifully that those things are the antidote.
I have much more to learn, as always, and will keep working through it here. And I hope we all keep finding each other, because we are so much more powerful when we come together. If nothing else, coming together shows us that we are not alone. And I know that ,collectively, we can find a better way forward for ALL of us.
Another fantastic read Jo! You have covered everything that needs to be said in this world of advocacy/patient partnerships etc. I am pretty lucky in my home state, but there is a lack of acknowledgement of our "tribe" in some areas that has no place in 2023. It's quite sad really because as you know, it's difficult to spend time studying at Uni only to discover a lack of respect by some people in power. Not all - but some. I think we have all been in at least one "tick box" situation which leaves us feeling very uncomfortable. Good for you for drawing attention to the inequities that still exist in some areas, despite there being ample evidence for the value of patient partners in research and all areas relating to whichever condition we may be looking at!
Thanks so much, Mary! There is a great deal of evidence for partnering wtih communities and the people who are most affected by polices, practices, research, etc, so it makes it all the more frustrating. And for so many amazing folks we work with, they know how much better it is to actually include the people they are studying/working with/trying to treat when trying to figure shit out!
What does give me hope is all the incredible folks we do work with who are as equally focused as we are on equity, on learning from a broad spectrum of ways of knowing pain, on justice, on meaningful collaboration, and on building communities. With those folks there isn't so much us vs them and so much more of recognizing our shared humanity and the value of ALL of our contributions when it comes to better understanding pain and what to do about it.
Those are the folks I want to be in community with, and working together in community is where I want to spend my limited time and energy. I'm done being 'just happy to be here'!
Totally agree with your sentiments Jo! The best progress is made when we can collaborate, . both with other advocates and with health professionals and researchers. I have experienced enough of this to appreciate the great outcomes. What we don't need is people treating us as though we should feel privileged to be in their company and talking to us as though we are an inconvenience to be tolerated!
We can do this! There are a lot of well informed, experienced advocates out there now and together, we can make a difference.
'What we don't need is people treating us as though we should feel privileged to be in their company and talking to us as though we are an inconvenience to be tolerated!' - hell yes to this!
We can do this, we are doing it! As with you, I've experienced so many true partnerships now, with great outcomes, that I know it can be done, done well, and benefit everyone. And more and more people seem to be coming on board with that every day, which is good for all of us!
Dear Jo - I am grateful for this excellent and "powerful" article. I will share it far and wide.
Poet David Whyte wrote: “Pain’s beautiful humiliations make us naturally humble and force us to put aside the guise of pretense. In real pain we have no other choice but to learn to ask for help and on a daily basis. In real pain we often have nothing to give back other than our own gratitude”. Does this reflect what actually happens in real life? I think it is "hit or miss".
At the Australian Pain Society's ASM this year, I presented on vulnerability and pain in a topical session with some excellent ladies. Reading your article, it seems that what you have experienced as a person with chronic pain + pain advocate is “more than normal vulnerability.”
This is how I see the vulnerability landscape in the pain setting:
*"inherent vulnerability to pain" - sources of vulnerability that are inherent to the human condition. They arise from our embodiment, the human need for support and protection, and the impact of trauma or persistent noxious experiences on our quality of life.
*"situational vulnerability to pain" is context-specific. It is caused or exacerbated by the particular situation of a person or social group. It can be short term, intermittent, or enduring (e.g., the specific pain outcomes of people without a visa detained in closed immigration detention facilities).
*Finally, some responses to pain may exacerbate existing vulnerabilities to pain (above) or generate new vulnerabilities. These are "pathogenic vulnerabilities to pain". This source is “pathogenic” because it is generated through dysfunctional relationships based on disrespect, prejudice, or abuse, or by socio-political situations characterised by oppression, injustice, persecution, or political violence.
These vulnerabilities can overlap.
Would it be true to say that you have been targeted more by "pathogenic vulnerability"?
Hi Simon, it's so wonderful to see you here! Thanks so much for your kind words and for sharing your thoughts here, and for introducing me to these terms/concepts, as I am not at all familiar with them! If you have any suggested references so I could learn more, I'd much appreciate it.
I would say that what you've described as pathogenic vulnerability is aligned with many of the issues I discuss related to injustice, racism, structural violence, etc. I'd love to learn more about it, though, because I struggle with the term pathogenic, and the characterization of it being 'dysfunctional relationships'. Relationship implies to me more of a two-way street, where this seems to be referring more to power imbalances, power abuses, and power over certain people.
Very interesting concepts to think about and would love to explore them a bit more deeply! Thanks so much for sharing. Your presentaiton at the APS ASM sounds incredible! Wish I had been there and hope our real life paths meet soon :)
Thanks for writing as always Jo. I like to think that true person centred care is how mutual power is harnessed for the greater good.
Much like green washing is everywhere in regards to the environment, I think the same is true for person centred care. Therapists often seem to think they can sprinkle it on top of THEIR approach rather than acknowledging that the person at the centre is far more important than them and being ok with this so leaving their ego at the door.
People like you Jo, brave enough to honestly express their lived experience of what I try to help with are so so valuable because it helps me do a better job of understanding and keeping you at the centre.
Thanks and keep being you xx
Thanks so much, Steven. Always love to see your comments! I agree that true person-centered care involves sharing power. That can be a really hard thing. It goes against what most health professionals are taught where paternalism and power over is the norm. I'm so grateful to all the people, like yourself, who are challenging those norms.
After so many years of kicking open doors, I was so happy just to be invited to a seat at the table. I too often made the mistake, though, of seeing the invitation as acceptance and respect - an ivitation for meaningful discussion and collaboration. Invitation does not equal inclusion!
The more I work with true collaborators and power-sharers, the more I see what true partnership and inclusion looks like, the more quickly I can see when it is just lip service being paid to person-centeredness now. When it's just the sprinkle on top of what's always been done! Both in care and in advocacy.
There's still a lot of tokenism, and a lot of pity that is seen as respect for people with pain, like were just a bunch of ignorant unfortunates who just need to be told what to do to make our lives better, rather than as worthy people in our own right with valuable knowledge, expertise, insights, and guidance to share.
The more we can all come together and share expertise, and share power, the better things will be for all of us, no matter how we identify in the 'pain space', be we people with pain, advocates, clinicians, administrators, educators, researchers - whatever. And so many of us carry more than one of those identities! Our shared humanity and our common goal of better undrestanding pain and what to do about can unite us and foster meaningful collaboration and co-creation that leads to a revolution in on we understand and treat pain, and people with pain.
Thanks for seeing and hearing me my friend! And for harnessing that mutual power for good :) Appreciate you so much. xx
Oh my god I LOVE this post!!! I especially love this quote you share with us:
"Speak up. Speak out. Get in the way. Get in good trouble, necessary trouble…"John Lewis
Good trouble.
I really relate to the part of your blog about "just being happy to be here" and "put up to get a leg up" is sort of what I was taught. That was the feminism that I was taught, to sort shimmy up to power,but its also what I have come to learn is damaging in society. Because when we are close to power, but have no power, we might start to be territorial over our spaces. This is what I am learning from so many other activists and social scientists, white cis-woman feminism is exclusionary because it is power given, not power taken. A kind of 'gratefulness' exists that is problematic and harmful.
Thank you for sharing your experiences and ythe pieces that help you make sense of that and move forwards. I've found Ren's work to be so deeply moving too :)
It seems to me that community, honesty and vulnerability are the antidote to the ignorance, wretchedness and violence in our society right now. Its hard to hate someone you embrace.
Thanks for your writing, as always xx
Thank you so much for this wonderful comment, Laura! And for introducing me to Ren. I am still in the rabbit hole! I still can't quite articulate what he and his work have meant to me since you introduced me to Hi Ren on Pain Geeks. It's more a lived experience than a cognitive one!
Between the Ren rabbit hole and so many things that have happened in the last few weeks with folks within positions of power who clearly do not value our contributions, I am finally starting to see those threads and through-lines of the meta-narratives and dominant discourses. I'm finally starting to see the water we swim in. Now it's a matter of weaving them into a coherent story so I can find ways to navigate those waters and act on what I see in meaningful ways.
That 'happy to be here' gratefulness is so problematic and harmful. I know I did real harm to other woman when I was a firefighter because I wanted to be the 'best one' of us. The exceptional one. You nailed it with that territorial comment when we're close to power, but have no power ourselves. We fight to protect the scraps we've been given - and are grateful for the scraps - rather than fighting for what is just and right. We buy into the competition narrative and that we need to crush others to get ahead, which only leads us to crush each other and prevents us from coming together in community, vulnerability, honesty. You said it beautifully that those things are the antidote.
I have much more to learn, as always, and will keep working through it here. And I hope we all keep finding each other, because we are so much more powerful when we come together. If nothing else, coming together shows us that we are not alone. And I know that ,collectively, we can find a better way forward for ALL of us.
Love you my friend xx
Another fantastic read Jo! You have covered everything that needs to be said in this world of advocacy/patient partnerships etc. I am pretty lucky in my home state, but there is a lack of acknowledgement of our "tribe" in some areas that has no place in 2023. It's quite sad really because as you know, it's difficult to spend time studying at Uni only to discover a lack of respect by some people in power. Not all - but some. I think we have all been in at least one "tick box" situation which leaves us feeling very uncomfortable. Good for you for drawing attention to the inequities that still exist in some areas, despite there being ample evidence for the value of patient partners in research and all areas relating to whichever condition we may be looking at!
Thanks so much, Mary! There is a great deal of evidence for partnering wtih communities and the people who are most affected by polices, practices, research, etc, so it makes it all the more frustrating. And for so many amazing folks we work with, they know how much better it is to actually include the people they are studying/working with/trying to treat when trying to figure shit out!
What does give me hope is all the incredible folks we do work with who are as equally focused as we are on equity, on learning from a broad spectrum of ways of knowing pain, on justice, on meaningful collaboration, and on building communities. With those folks there isn't so much us vs them and so much more of recognizing our shared humanity and the value of ALL of our contributions when it comes to better understanding pain and what to do about it.
Those are the folks I want to be in community with, and working together in community is where I want to spend my limited time and energy. I'm done being 'just happy to be here'!
Love you so much my friend!
Totally agree with your sentiments Jo! The best progress is made when we can collaborate, . both with other advocates and with health professionals and researchers. I have experienced enough of this to appreciate the great outcomes. What we don't need is people treating us as though we should feel privileged to be in their company and talking to us as though we are an inconvenience to be tolerated!
We can do this! There are a lot of well informed, experienced advocates out there now and together, we can make a difference.
Much love from me Jo ❤️
'What we don't need is people treating us as though we should feel privileged to be in their company and talking to us as though we are an inconvenience to be tolerated!' - hell yes to this!
We can do this, we are doing it! As with you, I've experienced so many true partnerships now, with great outcomes, that I know it can be done, done well, and benefit everyone. And more and more people seem to be coming on board with that every day, which is good for all of us!
Much love, Mary! x❤️x