What happened when I stopped telling 'my pain story'
Sharing the knowledge we've gained through our lived experiences is invaluable. Yet we can control what stories we tell, and what stories we don't
My pain is doing really well right now. Something to celebrate. Also something making me question my place in the advocacy world. Why? Because I think my pain is doing better because I’ve stopped sharing ‘my pain story’, with very few exceptions, and my pain and health are a good deal better (despite a pretty hectic and stressful year).
With what I know about pain, I’m not at all surprised. I’ve often wondered if living fully immersed in the world of pain, sharing my same pain story over and over again, wasn’t contributing to my own pain experiences. But it’s one thing to think not telling my pain story anymore might help, and a whole other thing to stop telling my story and seeing that play out.
My hip still aches and I still flare up, but it's also different somehow. The painfulness of the pain has changed.
I have told ‘my pain story’ a lot. A missed step off a fire engine and landing on path of ongoing worsening pain that didn’t get better and didn’t respond to treatment like it should have. Pain that didn’t make any sense and upended my world, my relationships, my career, my sense of who I was. Chances are, you’ve heard this story.
Arthur Frank has said when we keep repeating the same story, we’re still working through it. For the early years of telling my story, this was true. Sharing my pain story was really good for me for a time. It helped me make sense of things, gave meaning to my experiences, and gave me a sense of purpose.
But then it became something different. Once I’d made sense of that story, I still kept telling it whenever I was asked. I kept repeating the same story even though I’d long made sense of things. There was value in it, but somewhere along the way I stopped being in control without realizing it.
“As a nonfiction writer, you owe your audience the truth, but you don’t owe them the whole truth immediately. You are allowed to pick and choose.” Lucy Webster
And what I didn’t see for so long, or saw but ignored or rationalized away, was the harm. Reliving the worst years of my life over and over again with each retelling takes a toll. And it is a reliving, not just a retelling. Continually bringing up all the losses and fears, the shame and resentment, the frustrations and anger and injustices - reliving all of that all the time - seems to have kept me a bit stuck.
So, this year I stopped retelling ‘my pain story’. It has helped tremendously and I’m very grateful. It’s also been an incredibly hard decision to make. I feel like I’m letting people down when I say no to a new request, or someone asks me back to their conference or classroom. Especially when that request comes from a friend, even though I know they understand and want what’s best for me.
To give myself permission to say no, I keep coming back to an essay by Sue Robins, one of my favorite health care activists. In Not Telling Your Story Sue shares ‘ways to mitigate the trauma that can come from storytelling.’
And I love this recent advice from
, a disabled woman and journalist, on writing from lived experience:
So…with all the talk of not telling ‘my pain story’, why the hell am I starting up MyCuppaJo again? Because I have a lot more stories to tell. I’m looking forward to exploring other narratives, other ways of knowing, other stories, other angles. The pain story I’ve long told (which is not my entire story of pain, let alone my entire story) is still in the archives and available for anyone to read. I hope that people will keep reading and sharing it. Because our stories matter. They matter a whole lot.
Thanks for being here folks. I’m a bit rusty, so hope you’ll bear with me as I get my bearings writing and posting regularly again. For those who’ve been around awhile, you know how much I love nature and try to include a recent photo I’ve taken in my posts. Here you go, from Rocky Mountain National Park in early October…
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