I’m shocked at the negative response to such a realistic post - it demonstrates that truth hurts. Your justified anger at your supposed “healthcare” providers and administrators resonates with me. I, too, have felt almost unbearable frustration that the force dominating and wrecking my comfortable life (pain) makes so little impression on the people in charge of our care just because they can’t measure it.
The truly big and important things/events/feelings in life rarely submit to measurement because they impact us on a deeper, invisible level, where they alter the course of our lives.
Just because they haven’t found a way to measure it doesn’t mean it doesn’t exist. It only means they can’t rely on numbers to tell them what to do (and these days “healthcare” is often run on irrelevant numeric standards, like MME). They have to rely on our self-reports, which are often strange enough to arouse their suspicion. Only the best, wisest, most experienced doctors learn to see the pained truth in our eyes as we tell of our suffering (which is not quite as optional as that saying about pain.)
May you find more compassionate and kind care as you wind your way through the cancer treatment industry.
Unfortunately I'm not shocked, but it is disappointing. Maybe it's not the topic and it's just my writing! I do hope that those who unsubscribe still engage with these issues, because they are relevant to the people they treat or advocate for.
Thanks so much for sharing your own thoughts and experiences, too, I appreciate it so much. 'The truly big and important things/events/feelings in life rarely submit to measurement because they impact us on a deeper, invisible level, where they alter the course of our lives.' - that summarizes so much so well, especially when it comes to pain or trauma, or pain and trauma. The life and self upendingness cannot be measured on a numerical scale or face chart. And because of the lack of an 'objective measure', it is so often dismissed or trivialized or ignored. Even when not by the clinicians themselves, the system does not handle our messy humanness or our suffering very well (or at all).
So far I have had a wonderful cancer care team, yet there are still so many systemic hurdles to jump and stresses to manage just trying to navigate the health and health insurance system (we often seperate the two, at least here in the US, but they are inseparable! Just like trying to claim that work comp is not healthcare, yes it is for the people in the system!). I still can't wrap my head around all the things I want to talk about yet with this breast cancer experience, especially compared to my work comp experience, but there's some important things there I hope to be able to write about soon!
Thanks so much for engaging here, it's what keeps me sharing my writing with the world, and thanks so much for your kind words. It means a lot.
Beautiful beautiful writing Jo! You've helped me see below the waterline of the iceberg that is vigilance which is so insightful, you're a wizard to be able to articulate things like you do. I love how you've managed to highlight some of the root causes of why vigilance has been needed for survival. Recognising your strengths and harnessing them towards your goals is such a valuable part of a better life. Stopping someone from being vigilant is a nonstarter (that many therapists still try) but helping them redirect the vigilance to more helpful behaviours is possible in an environment where people are believed, validated and compassionately supported as they are where they are.
I hope your breast cancer experience where what is happening isn't doubted and you have nothing to prove or anyone to convince has given you a taste of where ongoing pain care will be in the future, and you're part of that change in your bravery to speak up and get on those podiums.
Thanks so much, Steven, this means a lot! I've been thinking about all of this quite a bit. I don't quite know how to bring it all together yet, but there is something there! Anna's restorative model and the attempts to expand ACEs from just adverse childhood experiences to include adverse community environments both demonstrate that how we treat pain (and trauma) cannot rely solely on changing the individual. The individual is not defecient, the are responding to their environment and experiences in totally appropriate and adaptable ways!
So I hope the least we can do is what you've laid out here, to create health care and treatment environments that are built on a foundation of belief, validation, and compassionate support of patients/people.
My breast cancer experience has been different than being in work comp, for sure, but there are still so many difficult things to overcome here in the US, where our health system is a capitalist endeavor. As I mentioned in my last post, the first person I would see in the early days (before we hit our out-of-pocket maximum, which is close to $10,000, atop the over $25,000 a year insurance costs) was the person collecting my payment. It creates such stress. We can bear this financial burden and I'm grateful for that, but not easily, and many people cannot. Medical debt is one of the leading causes of bankrupcy in the US - so no matter how wonderful your clinicians are, healthcare is not an environment that promotes healing, or reduces vigilance - if anything it increases the need for vigilance!
Ahhh, there's just so much. And I can't quite articulate it all the way I'd like yet, but hopefully I'll get there. Thanks so much for engaging, it makes sharing my thoughts worthwhile and helps me to further reflect and refine!!
I mean from my perspective your societal observations of women's need for more vigilance in life makes me think this could be one of the main reasons why women bear the bigger burdain of chronic pain.
Healthcare often feeling like it doesn't believe the impact it's taking on the person reporting it is another driver for more vigilance to better justify yourself to skeptical supposed carers.
Along with all the fear mongering 'experts' in healthcare trying to scan and test their way to understanding you rather than start with empathy and understanding by hearing your story. This savage iatrogenic damage is pointing out all that's wrong but then saying it still doesn't make sense and invalidating the person in pain further.
I could go on all day with rants about the injustice people in chronic pain face. Just know that people are here wanting to know what you think and feel and your writing is so insightful. Unsubscribes are like someone else said just feeling the truth hurts and running away rather than towards the problem.
I’m shocked at the negative response to such a realistic post - it demonstrates that truth hurts. Your justified anger at your supposed “healthcare” providers and administrators resonates with me. I, too, have felt almost unbearable frustration that the force dominating and wrecking my comfortable life (pain) makes so little impression on the people in charge of our care just because they can’t measure it.
The truly big and important things/events/feelings in life rarely submit to measurement because they impact us on a deeper, invisible level, where they alter the course of our lives.
Just because they haven’t found a way to measure it doesn’t mean it doesn’t exist. It only means they can’t rely on numbers to tell them what to do (and these days “healthcare” is often run on irrelevant numeric standards, like MME). They have to rely on our self-reports, which are often strange enough to arouse their suspicion. Only the best, wisest, most experienced doctors learn to see the pained truth in our eyes as we tell of our suffering (which is not quite as optional as that saying about pain.)
May you find more compassionate and kind care as you wind your way through the cancer treatment industry.
Unfortunately I'm not shocked, but it is disappointing. Maybe it's not the topic and it's just my writing! I do hope that those who unsubscribe still engage with these issues, because they are relevant to the people they treat or advocate for.
Thanks so much for sharing your own thoughts and experiences, too, I appreciate it so much. 'The truly big and important things/events/feelings in life rarely submit to measurement because they impact us on a deeper, invisible level, where they alter the course of our lives.' - that summarizes so much so well, especially when it comes to pain or trauma, or pain and trauma. The life and self upendingness cannot be measured on a numerical scale or face chart. And because of the lack of an 'objective measure', it is so often dismissed or trivialized or ignored. Even when not by the clinicians themselves, the system does not handle our messy humanness or our suffering very well (or at all).
So far I have had a wonderful cancer care team, yet there are still so many systemic hurdles to jump and stresses to manage just trying to navigate the health and health insurance system (we often seperate the two, at least here in the US, but they are inseparable! Just like trying to claim that work comp is not healthcare, yes it is for the people in the system!). I still can't wrap my head around all the things I want to talk about yet with this breast cancer experience, especially compared to my work comp experience, but there's some important things there I hope to be able to write about soon!
Thanks so much for engaging here, it's what keeps me sharing my writing with the world, and thanks so much for your kind words. It means a lot.
Beautiful beautiful writing Jo! You've helped me see below the waterline of the iceberg that is vigilance which is so insightful, you're a wizard to be able to articulate things like you do. I love how you've managed to highlight some of the root causes of why vigilance has been needed for survival. Recognising your strengths and harnessing them towards your goals is such a valuable part of a better life. Stopping someone from being vigilant is a nonstarter (that many therapists still try) but helping them redirect the vigilance to more helpful behaviours is possible in an environment where people are believed, validated and compassionately supported as they are where they are.
I hope your breast cancer experience where what is happening isn't doubted and you have nothing to prove or anyone to convince has given you a taste of where ongoing pain care will be in the future, and you're part of that change in your bravery to speak up and get on those podiums.
Much love ❤️
Thanks so much, Steven, this means a lot! I've been thinking about all of this quite a bit. I don't quite know how to bring it all together yet, but there is something there! Anna's restorative model and the attempts to expand ACEs from just adverse childhood experiences to include adverse community environments both demonstrate that how we treat pain (and trauma) cannot rely solely on changing the individual. The individual is not defecient, the are responding to their environment and experiences in totally appropriate and adaptable ways!
So I hope the least we can do is what you've laid out here, to create health care and treatment environments that are built on a foundation of belief, validation, and compassionate support of patients/people.
My breast cancer experience has been different than being in work comp, for sure, but there are still so many difficult things to overcome here in the US, where our health system is a capitalist endeavor. As I mentioned in my last post, the first person I would see in the early days (before we hit our out-of-pocket maximum, which is close to $10,000, atop the over $25,000 a year insurance costs) was the person collecting my payment. It creates such stress. We can bear this financial burden and I'm grateful for that, but not easily, and many people cannot. Medical debt is one of the leading causes of bankrupcy in the US - so no matter how wonderful your clinicians are, healthcare is not an environment that promotes healing, or reduces vigilance - if anything it increases the need for vigilance!
Ahhh, there's just so much. And I can't quite articulate it all the way I'd like yet, but hopefully I'll get there. Thanks so much for engaging, it makes sharing my thoughts worthwhile and helps me to further reflect and refine!!
I mean from my perspective your societal observations of women's need for more vigilance in life makes me think this could be one of the main reasons why women bear the bigger burdain of chronic pain.
Healthcare often feeling like it doesn't believe the impact it's taking on the person reporting it is another driver for more vigilance to better justify yourself to skeptical supposed carers.
Along with all the fear mongering 'experts' in healthcare trying to scan and test their way to understanding you rather than start with empathy and understanding by hearing your story. This savage iatrogenic damage is pointing out all that's wrong but then saying it still doesn't make sense and invalidating the person in pain further.
I could go on all day with rants about the injustice people in chronic pain face. Just know that people are here wanting to know what you think and feel and your writing is so insightful. Unsubscribes are like someone else said just feeling the truth hurts and running away rather than towards the problem.
All the love ❤️
Thank you for elevating the importance of experience of trauma as related to chronic pain. It is so important.
Thanks so much Mara! It's good to get a positive comment as a lot of people unsubscribed with this one! Appreciate you and all you do.