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”.
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
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.
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."
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”.
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
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.
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."