Maggie: So have you been to the new website?
Selena: Yes, I have been to the website. I was there looking around and found the self advocacy video. Plus I reviewed the menu of information at the top of the site.
Maggie: O.K.
Selena: So my first questions for you are why was the website created, what was its back-story and what are you hoping to accomplish with the website? Do you want to turn all of us living with chronic pain into advocates?
Maggie: Turning people living with chronic pain into advocates is my personal mission, so yes!
Selena: O.K. So tell me how you see that happening.
Maggie: I want to start by saying that I am not one of the creators of the website. I am just a user and I am one of the dozens of what they call "Voices of Hope" who are featured on the website. (Read and hear Maggie's story here.)
Before it was a website, it was a big, huge binder back in 2004 when it was first released. Naturally as technology has progressed it went digital with a CD-ROM with all that same information on it. The challenge, of course, was to keep everything updated, current and relevant. The website I think is just the latest logical step that can make that happen.
So I began using the In the Face of Pain website after attending a couple of different seminars where it was part of the curriculum. And because I was doing a lot of the same advocacy work already, I thought, 'Oh, wow, with this new website I don't have to reinvent the wheel.'
So, for example, if I am trying to get other volunteers to write letters to the editor, I have this new website that I can send them to for advice on how to do this.
When someone is looking for facts to use to update a Twitter feed, write a blog post or a create a Facebook status, I can direct them to the Key Messages About Pain information there as well.
If you live with a specific pain condition and you want to educate others about it, you can use the fact sheets to help you do that, like the ones for back pain, cancer pain, fibromyalgia pain and sleep & pain.
I also encourage people to contact their legislators about pain care issues and legislation addressing pain care. I want them to understand that just by calling and saying "I support this." or "I don't support this." is enough to make a huge, huge difference in the lives of people living with pain.
The website is really a "how-to" resource filled with many examples of how you can advocate for yourself or someone you love who lives with pain. It is also where you can go to get information about who your legislators are.
I think that everyone needs to become an advocate for better pain care. Even if you don't have pain in your life now, you will some day, either personally or as a care provider for a loved one. This website is a good way to get people introduced to the idea of becoming a pain care advocate.
Selena: Does that mean the In the Face of Pain website is going to ask us contact certain people regarding issues about pain?
Maggie: This particular website does not do that. The American Pain Foundation (APF) website does do this if you join the Action Network. The In the Face of Pain website can help you start from scratch and build your own advocacy effort. It also provides links to other organizations like the American Pain Foundation which I volunteer with (Maggie is on their Board of Directors).
Through the APF Action Network, you'll be notified of advocacy opportunities based on your zip code. You'll receive targetted emails alerting you when there is legislation in your state or local area relavent to your situation or illness. It will also notify you of issues on the national level as well.
Plus you'll get emails about media coverage on pain care with a link to take you right to the story so you don't have to search for it. It will also provide a link or instructions on how you can provide feedback to the producers, author or publisher of the story.
Selena: So using a website like the American Pain Foundation can help alert you to where advocacy is needed, and then the new In the Face of Pain website can help you learn to advocate successfully when you do contact those people who are talking about pain care and need input from those of us living with pain or caring for someone in pain about our situation and why it is so important to address it.
Maggie: Right. So if you are already an advocate, the Action Network gives you the information on where to focus your advocacy efforts. If you aren't yet involved and are looking to become an advocate, then the Advocacy 101 section of the In the Face of Pain website will cover information on how to get started.
In the Face of Pain also teaches you to advocate on a personal level, for yourself or your loved ones, in an actual healthcare setting or emergency situation.
To be continued...
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