When systems designed to support you, harm you

Photo of text from workshop book

From Living a Healthy Life with Chronic Conditions with commentary by Sarcozona

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! It was developed at leading universities and is offered in a lot of communities. I think it does offer a lot of good, basic advice, especially if you’re newly diagnosed. However, I also think the program has some serious problems and the training of their facilitators does not seem rigorous. My experience with the program was very painful:

The chronic pain workshop was upstairs, but I was sobbing in the washroom, loudly. Despite what you may have gathered from recent reports on my blog, I’m not actually much of a crier. I’m definitely not a public crier. But here I was.

I’ve been sick for a long time. Navigating my illness has been difficult, and I often feel like I’m on my own. I walked into a chronic pain workshop developed at a top university expecting to meet experts, people who studied chronic pain, who knew my illness and what living with it was like inside and out. But they weren’t experts and they were fresh out of a training for this program that I quickly realized wasn’t even designed for my kind of condition and which was kind of offensive to boot. Terribly disappointed, I sat transfixed with distress as the instructors read basic and patronizing advice from their manuals. How could my counsellor have sent me here? I don’t need to talk about adding “Relaxation and Better Breathing” to my “Self-Management Tool Box” – after 23 years of chronic migraine, I’ve got that figured out.

It was hard, too, to sit in a room with people talking about their illnesses and pain, even as superficially as this. Normally I can talk about my own illness dispassionately, but here I found I couldn’t speak at all. If I opened my mouth I wasn’t sure what would come out. A wail of grief, a shriek of rage? Nothing appropriate for a polite circle of cardigan-clad folks under fluorescents on a Sunday afternoon.

At the end of the class we were asked to draw up an action plan for the next week with a small goal we really wanted to accomplish and that we were certain we could accomplish. We had to fill out worksheets with big, childish font and blanks for our answers. I thought of the project management software I use, my daily focus lists, and sighed, but I tried to get into the spirit of the exercise. Sometimes simplifying leads to new insights! I chose a bit of reading I need to do to address one of the comments my advisor made on my proposal.

Right off the bat, there was trouble.

Continue reading on Gravity’s Rainbow.

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2 responses to “When systems designed to support you, harm you

  1. Yes. I find a lot of the time that systems designed to ‘help’ us are the most harmful thing. Ultimately, a lot of systems are broken. Thanks for the useful and thoughtful blog post, which reflects a similar experience I had.

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