Jo you are, as ever, brilliant and perceptive. Telling our story, undergoing that emotional labour/burden keeps our brains and bodies in fight or flight. Just as at times word swaps (not saying the pain word) and changing the way we talk and think about pain can be very helpful, so too not telling our story can be helpful. Also it does depend on the audience. It’s easier imo to speak to a group of others who live with, or who have lived with pain, than it is to talk to medics.
It can also feel like exploitation at times. I’ve become more careful with who I work, what I do.
I think the healthiest choice for me is to limit my advocacy, but I do want my story to be out there, which is why writing or video is good for me. I can let that do the work and I can move onwards, choosing when I speak to it.
We are not defined by pain, nor are we defined by recovery, or the life we find. We are defined by our inner selves.
Thank you for writing this, for your insights. Lovely to have you “back”.
It is so wonderful to hear from you, Niki! Thanks so much for sharing your kind words and support. Thanks also for sharing your thoughts here, which resonate so strongly with me. This is what I hoped for when starting a Substack - to reconnect with the folks who matter so much to me and to also have a space for them to share their thoughts, experiences, reactions, questions. So it means so much to me that you're here!
Your exploitation comment really hits home. Even amongst people with good intentions, I think sometimes they can forget what a toll reliving our worst experiences can has on us. That in so many ways we're not just telling these stories, but reliving them with each retelling. I am often shaky and wrought with emotion after finishing, which I found especially difficult during Covid times when everything was via Zoom and I'd end my story and not get the same kind of feedback and support I get when delivering a talk in person. For so long I just chalked those costs up to the greater good without really taking a measure of myself and how it was all affecting me.
I am so grateful to have had the opportunity to share my story - yet I think my story has probably been heard enough! That particular story at least. I want to hear from and learn from other people's stories, I want their lived and living experiences, their unique knowledge and insights, to have the same stage and same support that mine have.
I also have many other stories to tell, but want to keep them on the page/screen for now. At least until I feel like I have control over my own narrative again. I need to find that inner self after spending so many years advocating and being on an external stage.
Thanks so much, Niki. I'm so grateful to know you, so grateful your're here, so grateful to learn from and with you, and so looking forward to staying connected through this space!
Thanks so much for writing and sharing these beautiful reflections Joletta - makes my heart smile hearing you are on a good place right now with all you do. Hope to see you again in the future and catch up. All the best, Kjartan
Kjartan! It's so wonderful to see you here! Thank you so much for your kind words and unwavering support, it means so much to me. I hope our real life paths meet again soon! Hope you are doing well my friend.
I resonate with moving through the stages of 1) telling your story to help you process and make sense of it, to 2) telling a story because you feel like you have to, to 3) taking back control over when and how you tell it. I know in my own recovery from a traumatic brain injury I first was working on wrapping my head around my "new" identity as a "brain injury survivor", "one who is disabled", "wounded" and accepting those new parts of me. Now I am at a point where I think of my identity as these things (sometimes) but recognize my identity is SO much bigger. Because I have a more stable relationship with my health story it allows me to use (or not use) my story in a way that serves my relationships and my overall quality of life.
Thanks so much for sharing a bit of your own story here, Liz. I resonate with all you've said, too. I was really searching for new labels post-pain and medical retirement. I think I'm part because we are so often asked 'what do you do'. I didn't know what I 'did' anymore! I wanted to justify myself, and my lack of 'doing'. But of course healing and finding a new path in life is not doing nothing! It took me a long time to see that. And it took a long time to see everything I was going through as not just a pain story but a continuation of my life's story, of which pain was but a part.
My self being upended was the most difficult aspect of my pain to navigate. Yet I think identity is such an important aspect of the pain experience in so many ways, yet we do little to explore/address identity in pain research and care!
Thanks again so much for sharing some of yourself here. So glad you're here and so grateful to have met you in Dunedin!
Love the call for more research on the aspect of identity in pain experience and recovery. You are right, it isn't looked at enough. Please let me know if you are ever in Dunedin again. Would love to connect more!
Thank you for sharing and writing again. I'm noticing I feel much better when I don't keep telling my story. It makes sense why people do tell their stories esp. since Arthur Frank said "when we keep repeating the same story, we’re still working through it, still trying to make sense of things."
Thanks so much for sharing your experience, Angela. Telling my story helped a great deal, especially when I was still trying to make sense of things. And I think sharing our experiences can help others, too. Those who live with pain and can see themselves in our stories and not feel so alone, as well as researchers and clinicians who can learn from our lived and living experiences and knowledge.
I think for me it's just about taking control back of what stories I tell, and when I tell them. Thanks so much for reading the post and for your comments!
Jo you are, as ever, brilliant and perceptive. Telling our story, undergoing that emotional labour/burden keeps our brains and bodies in fight or flight. Just as at times word swaps (not saying the pain word) and changing the way we talk and think about pain can be very helpful, so too not telling our story can be helpful. Also it does depend on the audience. It’s easier imo to speak to a group of others who live with, or who have lived with pain, than it is to talk to medics.
It can also feel like exploitation at times. I’ve become more careful with who I work, what I do.
I think the healthiest choice for me is to limit my advocacy, but I do want my story to be out there, which is why writing or video is good for me. I can let that do the work and I can move onwards, choosing when I speak to it.
We are not defined by pain, nor are we defined by recovery, or the life we find. We are defined by our inner selves.
Thank you for writing this, for your insights. Lovely to have you “back”.
It is so wonderful to hear from you, Niki! Thanks so much for sharing your kind words and support. Thanks also for sharing your thoughts here, which resonate so strongly with me. This is what I hoped for when starting a Substack - to reconnect with the folks who matter so much to me and to also have a space for them to share their thoughts, experiences, reactions, questions. So it means so much to me that you're here!
Your exploitation comment really hits home. Even amongst people with good intentions, I think sometimes they can forget what a toll reliving our worst experiences can has on us. That in so many ways we're not just telling these stories, but reliving them with each retelling. I am often shaky and wrought with emotion after finishing, which I found especially difficult during Covid times when everything was via Zoom and I'd end my story and not get the same kind of feedback and support I get when delivering a talk in person. For so long I just chalked those costs up to the greater good without really taking a measure of myself and how it was all affecting me.
I am so grateful to have had the opportunity to share my story - yet I think my story has probably been heard enough! That particular story at least. I want to hear from and learn from other people's stories, I want their lived and living experiences, their unique knowledge and insights, to have the same stage and same support that mine have.
I also have many other stories to tell, but want to keep them on the page/screen for now. At least until I feel like I have control over my own narrative again. I need to find that inner self after spending so many years advocating and being on an external stage.
Thanks so much, Niki. I'm so grateful to know you, so grateful your're here, so grateful to learn from and with you, and so looking forward to staying connected through this space!
Thanks so much for writing and sharing these beautiful reflections Joletta - makes my heart smile hearing you are on a good place right now with all you do. Hope to see you again in the future and catch up. All the best, Kjartan
Kjartan! It's so wonderful to see you here! Thank you so much for your kind words and unwavering support, it means so much to me. I hope our real life paths meet again soon! Hope you are doing well my friend.
I resonate with moving through the stages of 1) telling your story to help you process and make sense of it, to 2) telling a story because you feel like you have to, to 3) taking back control over when and how you tell it. I know in my own recovery from a traumatic brain injury I first was working on wrapping my head around my "new" identity as a "brain injury survivor", "one who is disabled", "wounded" and accepting those new parts of me. Now I am at a point where I think of my identity as these things (sometimes) but recognize my identity is SO much bigger. Because I have a more stable relationship with my health story it allows me to use (or not use) my story in a way that serves my relationships and my overall quality of life.
Thanks so much for sharing a bit of your own story here, Liz. I resonate with all you've said, too. I was really searching for new labels post-pain and medical retirement. I think I'm part because we are so often asked 'what do you do'. I didn't know what I 'did' anymore! I wanted to justify myself, and my lack of 'doing'. But of course healing and finding a new path in life is not doing nothing! It took me a long time to see that. And it took a long time to see everything I was going through as not just a pain story but a continuation of my life's story, of which pain was but a part.
My self being upended was the most difficult aspect of my pain to navigate. Yet I think identity is such an important aspect of the pain experience in so many ways, yet we do little to explore/address identity in pain research and care!
Thanks again so much for sharing some of yourself here. So glad you're here and so grateful to have met you in Dunedin!
Love the call for more research on the aspect of identity in pain experience and recovery. You are right, it isn't looked at enough. Please let me know if you are ever in Dunedin again. Would love to connect more!
Thank you for sharing and writing again. I'm noticing I feel much better when I don't keep telling my story. It makes sense why people do tell their stories esp. since Arthur Frank said "when we keep repeating the same story, we’re still working through it, still trying to make sense of things."
Thanks so much for sharing your experience, Angela. Telling my story helped a great deal, especially when I was still trying to make sense of things. And I think sharing our experiences can help others, too. Those who live with pain and can see themselves in our stories and not feel so alone, as well as researchers and clinicians who can learn from our lived and living experiences and knowledge.
I think for me it's just about taking control back of what stories I tell, and when I tell them. Thanks so much for reading the post and for your comments!