By Ed Coghlan
When the National Pain Report ran this story about a US Pain Foundation survey that showed pain patients expressing overwhelming skepticism about the federal government programs affecting them, many readers commented on the story.
Those comments prompted one of our valued contributors and pain patient advocate, Terri Lewis PhD to write that pain patients should stop complaining and start doing something. Here’s what she wrote:
I’m going to say something people don’t want to hear.
People with pain need to stop acting like victims.
People who have pain must become experts, informed with the best information about the problems they are experiencing, with solutions they can articulate with ONE VOICE.
Everyone with an ax to grind doesn’t need a Facebook group. What is needed is collaboration, and research. Even with limited resources, massing the voices and pocketbooks of persons with pain as a single voice working under strong leadership can make a difference.
If we want the attention we deserve we must walk the walk and speak like professionals with voices that can be heard.
Do something about it instead of shouting into the well and listening to your own voice come back to you. Shouting may make you feel better but it will not lead to change.
When I emailed Dr. Lewis, who is teaching in Taiwan, that I planned to run her comments in a blog, she wrote:
“1,000,000 voices acting together as 1 will be far more powerful than multiple messages deteriorating in the echoes.”
Paul Gileno, the President of the US Pain Foundation—the nation’s largest pain patient advocacy group—indicated that the group is planning a heightened advocacy campaign which will be announced soon.
As one survey respondent said, “What we need is a social uprising campaign to bring everyone together and fully informed on each of the different policies in order to make change happen.”
Gileno said, “They want to make a statement.”