Nothing about us without us

In late 2020, I participated in a New Zealand Pain Society (NZPS) webinar on why it is crucial to consider lived experience in pain management: “Pain education webinar on “Nothing about us without us” – A coalition of lived experience experts in Aotearoa New Zealand.”

The NZPS has very kindly made this webinar available for anyone to watch. Scroll down at the link to see the description of the webinar and the direct link to the recording.

Alongside sharing this recording, in this short pinch I’m going to outline two of the reasons I think that creating space for lived experience is so crucial for people in chronic pain and for the management of our pain.

1. because lived experience is so diverse.

My lived experience with chronic pain is different from every single other person with chronic pain’s experience. There are of course commonalities that could be good targets for understanding and managing chronic pain, but there are just as many differences in our pain experiences and the social context of those experiences.

This is one of the reasons I blog here, to share my experience as an example of what it’s like to live in this world with chronic pain.

One of the reasons managing pain is so tricky is because different things help different people. The more voices we include in conversations about chronic pain and chronic pain management, the more we work towards having a wide variety of pain management strategies available.

2. because you can’t always tell by looking if someone is in pain.

My husband shared this cartoon with me that captures invisible experiences quite well.

A four panel cartoon of a dinosaur. In each panel, the dinosaur looks the same. However, a different heading is above each of the four dinosaurs: "dinosaur", "depressed dinosaur", "ill dinosaur", "disabled dinosaur".
From @dinosandcomics on Instagram.

Stigma is often associated with experiencing invisible illnesses. Read Daniel S. Goldberg’s elegant analysis of stigma in chronic pain. In Goldberg’s definition, stigma is a signal of difference. I hope (not based on any evidence here) that the more people who are comfortable* to share their lived experiences, the less stigma will be experienced by those of us with chronic pain. I hope that there will slowly be change in how people with chronic pain are understood and treated by those close to them, medical professionals, and by societal structures when seeking assistance to live the life that they want to.

This is another of the reasons I blog here, to give people who don’t know what it’s like to live with chronic pain a real, concrete example. To strip back some of the invisibility.

* comfortable is not exactly the right word here, but sharing your experience is a personal choice and not an easy one.

2 thoughts on “Nothing about us without us

  1. So grateful for you haze and for the stories and thoughts you share. I find it very difficult to share my lived experience with people. It’s not something that I feel people will understand. And people often don’t. Love the dinosaurs, thanks Dave 😉 I guess I’m afraid that’ll be how others will identify me. It’s not something I like to identify with. Yet it does control my life to a significant extent. Perhaps it would help me if I did share more.. anyway. A rogue stream of consciousness for the evening..


  2. I love and appreciate your streams of consciousness Ro. Thank you for commenting here on Pinches when you want to. As you know, it’s taken me years to be as comfortable as I am sharing my stories and experiences. It’s not easy and sometimes sharing goes really badly. I’ve also changed how I see myself in the last few years – pain is not all I am but it has definitely shaped who I am. I’m more and more ok with that. This is me though and while I’ve had mostly good experiences, especially in the last few years, in sharing that I have chronic pain I recognise that I’m sadly, likely in the minority here.


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