Last week, I had the enormous pleasure of attending the U.S. Pain Foundation‘s annual pain ambassador summit and gala. It was positively awesome.
Spending a couple days surrounded by people in pain and living with chronic illness might not sound like fun to some folks, but for me, it was so fun, and so many other things: challenging, comforting, hilarious, insightful, rewarding… just to name a few. So today, AWAP Wednesday*, I want to share a few things about my favorite patient-focused advocacy organization, and encourage you to find your tribe, too.
*AWAP = As Well As Possible
Advocacy efforts make a huge difference
Among our group of state pain ambassadors and other advocates, we have folks who are unemployed, on permanent disability. We have folks who can barely make it through the day without medical intervention. We have folks who are missing limbs, who use assistive devices, who have cognitive difficulties related to stroke. We’re kind of a mess.
But we’re a beautiful mess. These fantastic people work incredibly hard to use the energy and resources they DO have to make a real difference in peoples’ lives. They take their advocacy and service work seriously, and they help people across the country get the pain treatment they need and deserve… every dang day. It’s so empowering to spend a couple days with them and learn how they work, what motivates them, and how they find workarounds to maximize their results despite health-related limitations. They get it done, people.
Sometimes we need a good laugh
When I spend time with my tribe of pain advocates, it’s not all serious chat about how we’re going to sway lawmakers to take our side or how we’ll teach people to take control of their lives. We also have a helluva good time.
If you can’t make fun of yourself, who CAN you make fun of? And if you can’t laugh about life with chronic pain and illness, I believe you’re kind of doomed to be miserable.
The company of my friends keeps that from happening. They keep be laughing, silly and joyous no matter how much I’m hurting. And they’re pretty fabulous dancers.
It’s great to learn together
One of the most memorable moments of the weekend for me was teaching a workshop on how to tell your personal pain story in a compelling, ally-winning way. It was a chance to get to know my fellow advocates, and teach them how to be stronger storytellers.
When we learn together, we’re not just exploring techniques for advocacy; we’re also learning from each others’ experiences. I don’t know what it’s like to have reflex sympathetic dystrophy, for example, but now I have something of a better understanding — enough that I can advocate for the folks in my community that have it with real-life examples of the challenges they face. Learning these techniques together and sharing ideas, stories and resources makes us stronger as a community.
So how will you find your tribe?
I lucked out; President Paul Gileno called me when U.S. Pain Foundation was mere months old, recruiting me to write and advocate for our community. Since then, I’ve checked out lots of other advocacy groups, but none have the energetic fit of U.S. Pain Foundation.
How about you? I bet you have enough time and energy to spend a few minutes a week to do some advocacy work… and honestly, sometimes that’s all it takes.
I can’t encourage you enough to seek out your people — your tribe. Find the people who understand you, support you, and advocate for you. Find the organization that’s making the effort to make change, and get involved. The satisfaction of helping others and being part of something bigger than yourself is, frankly, magical.
And of course, if you’re interested in working with the U.S. Pain Foundation, I’m happy to hook you up.
Now it’s your turn:
How are you adding your voice to advocacy efforts for our chronic pain and illness community? Join the conversation in the comments below, share your experience and ask for advice from our community.
Next week, I’ll be back with a fun video. But if you can’t wait, check out our AWAP Wednesday video playlist, which has nearly eight hours of guidance, advice, and bloopers.
Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.
Until we meet again: Be AWAP! Smooches!