3rd Annual US Pain Summit

3rd Annual US Pain Summit

By Katie M. Golden

Making your way in the world today
Takes everything you’ve got;
Taking a break from all your worries
Sure would help a lot.
Wouldn’t you like to get away?

Sometimes you want to go
Where everybody knows your name,
And they’re always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.

If you hadn’t already figured it out, that’s the theme song from the TV show Cheers. It immediately popped into my head when I received a text from my roomie at the US Pain Summit. It was the day after we had all returned home. She wrote, “I miss being around people who understand.” My response was, “So great to have a guilt-free weekend and have everyone watching out for each other. Perfect environment.” In the back of my mind, this song crept into my brain on repeat. It perfectly describes the weekend where 50 pain ambassadors gathered at the University of New England in Portland, Maine in early August to learn more about the many facets of the US Pain Foundation.

I’m fairly new to US Pain and wanted to find out which programs I felt I could make the biggest impact. We learned about:

  • In-person support groups through the Pain Connection program.
  • Discussed the mission and position statements that US Pain has on certain topics.
  • Got a crash course in sharing legislative bills needing support via social media.
  • Talked about testifying before state Congressional committees or before the FDA.
  • Received guidance on how to craft our own stories and elevator speeches.
  • Learned about how we can help the Beautify in Blue campaign for September’s pain awareness month.
  • Prepped for KNOWvember campaign, which will educate on rare disease.
  • Learned how to track bills on the state and federal levels.
  • Discovered inventive ways to fundraise.
  • Found out about the new program called People with Pain Matter.
  • Talked about the Invisible Project.

All of these discussion points can be found on the US Pain Foundation’s website: www.uspainfoundation.org

I discovered that I want to get involved in legislative matters and testifying as well as contributing in some way to the Beautify in Blue campaign in Sept. I left the summit with so many ideas and a new fervor to jump into the many aspects of the Pain Ambassador program.

Just as important as learning about the US Pain Foundation’s goals and programs, was the personal connections we made and the safe, loving environment that was created during the 3 days we spent together.

Making your way in the world today, Takes everything you’ve got- most of the attendees struggle on a daily basis just to cope each day with debilitating pain. It takes everything we’ve got to get out of bed, to go to the grocery store, to respond to emails. We are constantly feeling guilty about letting others down, beating ourselves up that we didn’t check everything off our to-do lists and embarrassed that we have to cancel once again. The Summit took away all of those fears. The staff recognized our need to be comfortable. Blankets and extra pillows were provided in the lecture hall. They even dragged in some large comfy chairs and sofas so people could be relax and still be involved.

Even though the Summit was held on a college campus, attendance was never taken. If you needed to walk around during a presentation, no one questioned you. If you snuck out to take a nap, everyone understood. If you were missing for too long, your new support system would check in on you to see if you needed food, not to tell you to get to class.

There was never a need to apologize, we all “get it.” And we weren’t shy in asking for help. For a few days we didn’t feel like a burden to anyone. No one made us feel guilty. We were “taking a break from all our worries,” as the song goes.

That doesn’t mean our pain was gone during the Summit, it just means we were surrounded by an amazing support group with bonds that will last a lifetime.

I learned so much about other chronic pain diseases. Ehlers Danlos Syndrome, Complex Regional Pain Syndrome (CRPS), Fibromyalgia, Stills disease, Sickle Cell. While we all had different variations of medical diagnoses and comorbidities, “our troubles are all the same.”

Throughout the weekend, I jotted down nuggets of wisdom from my fellow pain warriors. Anyone with chronic pain can relate:

  • “None of us chose to live with our conditions.” – Ellen Smith
  • “Stigmatization leads to barriers.” –Ed Bilsky
  • “I gradually lost sight of the fabric of my life.” –Sue Gold
  • “Just start singing the alphabet.” –Christa Whightsel on her list of comorbidities.
  • “You are all healers.” –Gwenn Herman
  • “Just say thank you.” –Juliana Capshew’s response when someone says she doesn’t look sick.

The 3rd annual US Pain Summit was an absolutely amazing event. I’m excited to contribute to the chronic pain world. If you are interested in becoming a Pain Ambassador, again please go to www.uspainfoundation.org to learn about all the different ways to get involved.


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Authored by: Katie Golden

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Juliana Joie

Hi Tim! I was one of the attendees of the Summit, and yes, Trigeminal Neuralgia was specifically mentioned among the conditions at the Pain Summit. That said, the summit itself was more focused on Advocacy and learning how to effectively tell our stories and work with legislators to bring about positive change for people with pain. We only talked about particular diagnoses peripherally. We value all people with pain, no matter their diagnosis, and we support their journeys. I hope this helps! Juliana Joie, Pain Ambassador Advocate, US Pain Foundation (This isn’t an official statement, just my take 🙂

Donna Mc

CRPS is in the article above and it stands for:
Complex Regional Pain Syndrome.

Just a question to Katie please–are you originally from Troy, MI and a classmate of my Daughter Julie until your Dad moved to NY as GM Treasurer?? Plse advise!

Thank you for your superb summary of the event. I personally have run a Trigeminal Neuralgia (TN) Support Group in Suburban Detroit since 1998 meeting monthly to discuss with Members and top Neurosurgeons and other Medical Professionals the pain which in the medical books state is the worst pain known to mankind and called the “Suicide Condition”! With regard to the latter point, I was dismayed that TN may not have been discussed. Our International Facial Pain Association/TNA is located in Gainesville, FL along with Support Groups located throughout the U.S., the U.K., Australia, Mozambique, etc.


What is CRPS?

The smallest political unit of society is the family. Loved ones care about, and for, each other…at least in theory. When disputes arise, families work their problems out…in theory.

When the family isn’t handling the challenge of chronic pain (or any other issue that’s equally serious), help is needed.

What’s gone wrong in the support system for adults with chronic pain, is that a lot of people have the dumb idea, that people have to be forced to do what is good for us.

By assuming that most people won’t simply listen to a well-reasoned explanation, learn from it, and take action themselves, our society has addicted itself to using force.

Too many of us mistrust a person who gets up during a meeting, to stretch out a leg cramp.

Too many of us are terrified of someone napping five minutes past wake-up call…fearing a contagion of laziness that will halt the orderly functioning of society.

By acquiring these deep-seated fears, that others may abruptly alter their plans to attend to their own health and comfort, we’ve managed to create a society that lives in terror of illness.

If there’s a single thing we pain patients do for one another, accepting that we need to limit our exposure to the things that exhaust us, is a hugely-valuable step. The outside society fears us, makes up goofy myths about us, Interferes with our ability to function, because it refuses to see that pain is exhausting and that pain prevention is liberating.

By accepting one another’s limitations, we’ve set an example for everyone else in society to follow.

That was a great first step.

Jim Roberts

I have had CRPS for nine years it has changed my life completely,started in my left hand from a dog bite,it’s since then has affected my chest,right arm,lower back no strength,all sorts of weather affects me also I have copd . It’s hard to socialize I find things that will relax me having COPD humidity is tough on me there’s more just a quick note ,we all need each other and educate Drs. And Nurses