Gravity's Rainbow

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Rewriting the book on living with chronic illness

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Cheer up! | From the Chronic Pain Self-Management Program Workbook by LeFort and Webster

Cheer up! | From the Chronic Pain Self-Management Program Workbook by LeFort and Webster

Have you or someone you loved with a chronic condition been let down by the medical system’s approach to chronic pain self-management? @CampOther, @ElitaBaldridge, @cginpvd, myself, and others are working on a project to improve things a bit and we’d like your help.

Patients with chronic pain and illness often have a hard time getting the help and care they need from the medical system. Learning to manage our conditions is often a long, lonely process of trial and error and google. That’s why I was so excited when my counsellor recommended the Chronic Pain Self-Management Program to me – a program developed by actual medical professionals with research backing it up? How wonderful!

The reality was less so.

The entire workshop is 6 sessions long. I will not be attending further sessions, but I have read through the two books for the course: Living a Healthy Life with Chronic Conditions and Chronic Pain Self-Management Program Workbook. I do think that this course presents valuable information for people with chronic conditions, especially if they are relatively newly diagnosed. If someone had given me the practical information in this course when I was 10, I would have saved myself a lot of trouble. But surrounding the basic, useful, information are a lot of flat out harmful portrayals of people with chronic conditions, ignorance, judgement, and tone deaf language. Structural issues are all but ignored.

As I read Living a Healthy Life, I annotated it heavily, imagining mailing it with all my angry comments to the authors. So when @CampOther suggested a rewrite, I jumped at the idea. A group of us are editing and annotating the book with plans to send it back to the program managers at Stanford. If you’d like to help us, get me your email address and I’ll send you an invite to the google doc where the action is happening.

This program – and it’s materials – are apparently very widely used in this space, so making a change here would make a difference to a lot of people with chronic conditions looking for help.

 

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8 Comments

  1. Hi, I’d like to help out/contribute if I can. Various chronic health issues diagnosed from 2001. Currently working as editor/proofreader/summary writer in government department

    • Wonderful that you’d like to help – I’ve sent an invite. Any way (insights, skills, etc.) and any amount you can contribute would be great. I’ve sent you an invite via email, so let me know if you don’t receive it.

  2. I would love to as well. Been dealing with chronic pain since the 90s and I do freelance academic editing 🙂

  3. I’d love to help out – I have EDS and fibromyalgia. I had to leave a PhD due to my illness and now do part-time research for a GP practice and some unpaid ESA research,

  4. I just came across this post, but if you’re still working on this, I’d be interested in helping. I’m an economist in a tenure-track job at a liberal arts college, living with an autoimmune arthritis condition for the last 12 years.

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