Beautiful post. It is great to find out where you are at these days. I was thinking about the SDPS as I saw some posts on social media, fond memories of that first one.
To adopt a position that suspends judgement of pain and fosters acceptance labels that fit into the binary good/bad are not helpful, IMHO. For example, I find labels such as castrophizing and maladaptive not helpful overall but that is what science has decided to use. Avoidance and fear is okay because it seems less judgemental. I do wonder if patients identify it as fear (of pain). I don't think I have heard many (if any) patients say they were afraid or fearful of pain. However plenty don't want to experience it and would like it to go away.
At the end of the day I think we should all accept, as a community, that these responses to pain are normal. That their are legitimate reasons why people avoid pain and in the absence of quality info and anirturing relationships, avoidance will persist.
Does approaching pain (not avoiding it) lead to it's resolution, most of the time. Yet for some it does not. However for those that don t experience relief, hopefully teaching them to make conscious decisions about what they want to approach vs avoid will lead to a life may be approached more fully with pain. In all my experience with this field that is about as simply as I can characterize things.
You too had positive impact on my work as an educator as I now incorporate patient panels into all of my classes. Students love this. It was seeing your advocacy work and conversations with you that led me to this.
We are all in this together. Thank you for continuing to write.
So nice to see you here, Eric! I'm glad you found me. Part of the reason I started the Substack is because I miss all my old friends on social media. I have really fond memories of that first Summit, too. It truly was your presentation that helped me the most. I felt seen, and like it gave me permission to move along a different path and I'm forever grateful for that.
I totally agree with you on the catastrophizing and maladaptive labels, it's something I've been thinking about a lot lately. I aim to explore those sorts of labels in future posts. When I think of my own experiences I try to take a more neutral stance now. I used to say that some trauma during my tweens/early teens led me to make bad decisions, or engage in bad behaviors. Now I try to reframe it as some really challenging and traumatic experiences led me to think and act in certain ways, without the valence judgement. It's helped me to be kinder to my younger self (and therefore my current self). I also realize now how much of my adult self was formed by those experiences, and I'd argue much of it was adaptive, not maladaptive. And I'm still adapting with every new experience, every new reflection on previous experiences, every new story or retelling of an old story. It's just adaptation, which sounds much better to me. Why can't we just leave it at that? Make some observations of how we've adapted in the past and how we may adapt in the present and the future?
Your question about fear is really interesting to me. I can't remember ever being fearful of the pain, or saying I was afraid of the pain. I do remember being worried and anxious about what the pain meant - damage? will keep getting worse over time?, especially what it meant for my future. Arthur Frank has referred to suffering as the loss of a viable future - I think that's where I was. Suffering. And I definitely wanted that suffering to go away. It was awful.
I think most of my avoidance - although I never called it that - was to avoid the total loss of my future. To preserve what little I had left of me. It wasn't avoidance so much as loss. Profound loss. Loss of most all the things I used to do that made me feel like me. I didn't want to avoid those things, it was killing me not to engage with the world, with family and friends, with work, with the great outdoors.
Along the way I felt like I was given permission to grieve all those losses, even if that permission was granted indirectly! But eventually I felt like my challenges and distress were acknowledged and normalized - of course I was so sad and distressed and angry and frustrated, who wouldn't be? That was such a huge weight lifted that I didn't even know I was carrying. Your presentation that first SDPS was a part of that permission!
I've never thought of what I've done as approaching pain, so that is interesting for me and I will ponder that a bit more! I don't know that I ever approached it as made space for it. And my approach to life certainly changed when I could make space for pain, without so much judgment (both of the pain and of myself with pain). And it's never been just one or the other, but avoiding some things (even now) and approaching others depending on a gazillion factors to ensure I am living a life I want to live. I'm going to keep thinking on this though!
We are all in this together. It seems more and more people are starting to recognize this and come together around shared human experience rather than trying to reduce pain down to it's parts. At least I hope so. Thank you for your kind words, it means more to me than I can convey.
I'd love to continue to hear your thoughts, too! I hope this is a good format for us all to share ideas and discuss these things.
Aww, thank you Laura! This means so much to me. I truly am an anxious wreck every time I hit publish, and your reading my post and sharing these kind words has helped take the edge of this morning! Much love my friend.
Beautiful post. It is great to find out where you are at these days. I was thinking about the SDPS as I saw some posts on social media, fond memories of that first one.
To adopt a position that suspends judgement of pain and fosters acceptance labels that fit into the binary good/bad are not helpful, IMHO. For example, I find labels such as castrophizing and maladaptive not helpful overall but that is what science has decided to use. Avoidance and fear is okay because it seems less judgemental. I do wonder if patients identify it as fear (of pain). I don't think I have heard many (if any) patients say they were afraid or fearful of pain. However plenty don't want to experience it and would like it to go away.
At the end of the day I think we should all accept, as a community, that these responses to pain are normal. That their are legitimate reasons why people avoid pain and in the absence of quality info and anirturing relationships, avoidance will persist.
Does approaching pain (not avoiding it) lead to it's resolution, most of the time. Yet for some it does not. However for those that don t experience relief, hopefully teaching them to make conscious decisions about what they want to approach vs avoid will lead to a life may be approached more fully with pain. In all my experience with this field that is about as simply as I can characterize things.
You too had positive impact on my work as an educator as I now incorporate patient panels into all of my classes. Students love this. It was seeing your advocacy work and conversations with you that led me to this.
We are all in this together. Thank you for continuing to write.
So nice to see you here, Eric! I'm glad you found me. Part of the reason I started the Substack is because I miss all my old friends on social media. I have really fond memories of that first Summit, too. It truly was your presentation that helped me the most. I felt seen, and like it gave me permission to move along a different path and I'm forever grateful for that.
I totally agree with you on the catastrophizing and maladaptive labels, it's something I've been thinking about a lot lately. I aim to explore those sorts of labels in future posts. When I think of my own experiences I try to take a more neutral stance now. I used to say that some trauma during my tweens/early teens led me to make bad decisions, or engage in bad behaviors. Now I try to reframe it as some really challenging and traumatic experiences led me to think and act in certain ways, without the valence judgement. It's helped me to be kinder to my younger self (and therefore my current self). I also realize now how much of my adult self was formed by those experiences, and I'd argue much of it was adaptive, not maladaptive. And I'm still adapting with every new experience, every new reflection on previous experiences, every new story or retelling of an old story. It's just adaptation, which sounds much better to me. Why can't we just leave it at that? Make some observations of how we've adapted in the past and how we may adapt in the present and the future?
Your question about fear is really interesting to me. I can't remember ever being fearful of the pain, or saying I was afraid of the pain. I do remember being worried and anxious about what the pain meant - damage? will keep getting worse over time?, especially what it meant for my future. Arthur Frank has referred to suffering as the loss of a viable future - I think that's where I was. Suffering. And I definitely wanted that suffering to go away. It was awful.
I think most of my avoidance - although I never called it that - was to avoid the total loss of my future. To preserve what little I had left of me. It wasn't avoidance so much as loss. Profound loss. Loss of most all the things I used to do that made me feel like me. I didn't want to avoid those things, it was killing me not to engage with the world, with family and friends, with work, with the great outdoors.
Along the way I felt like I was given permission to grieve all those losses, even if that permission was granted indirectly! But eventually I felt like my challenges and distress were acknowledged and normalized - of course I was so sad and distressed and angry and frustrated, who wouldn't be? That was such a huge weight lifted that I didn't even know I was carrying. Your presentation that first SDPS was a part of that permission!
I've never thought of what I've done as approaching pain, so that is interesting for me and I will ponder that a bit more! I don't know that I ever approached it as made space for it. And my approach to life certainly changed when I could make space for pain, without so much judgment (both of the pain and of myself with pain). And it's never been just one or the other, but avoiding some things (even now) and approaching others depending on a gazillion factors to ensure I am living a life I want to live. I'm going to keep thinking on this though!
We are all in this together. It seems more and more people are starting to recognize this and come together around shared human experience rather than trying to reduce pain down to it's parts. At least I hope so. Thank you for your kind words, it means more to me than I can convey.
I'd love to continue to hear your thoughts, too! I hope this is a good format for us all to share ideas and discuss these things.
I lost all my labels - wow. Joletta you write so wonderfully and always make me think deeply!
Thank you for another beautiful post. Writing to understand is absolutely it, its a process of sense making and I'm so glad you share yours with us!
Xx
Aww, thank you Laura! This means so much to me. I truly am an anxious wreck every time I hit publish, and your reading my post and sharing these kind words has helped take the edge of this morning! Much love my friend.