If you are signed up for my email list then you’ll already know that this week I am posting twice for a very special reason. Today I had the amazing opportunity to bring the founder of The U.S. Pain Foundation, my sister, parents, and my sister’s physical therapist to lecture my classmates on patient advocacy and the important role a physical therapist has the ability to play in a patient with chronic pain. September is Pain Awareness Month so it was very fitting that this lecture fell in the last week. Awareness and advocacy is a non-stop effort but September is a month to really showcase support for those suffering from chronic pain. I thought it was fitting to share a bit about this special opportunity on my blog, hopefully it makes up for not posting last Friday.
The U.S. Pain Foundation has always been a huge supported of Melanie which is why it was an easy decision to make them one of the foundations we chose to support with whatever donations we raise from Crazy Sock Day. An advocate is one of the most important roles that I play for Melanie, second to her sister. But I am just one person, the fact that The U.S. Pain Foundation also is proud to be an advocate for my sister among several others suffering from chronic pain is something really special. That’s why bringing Paul Gileno, the founder and president of U.S. Pain, to lecture my class is so important to me. There is strength in numbers and I’m proud to say that I will be graduating with an entire class of physical therapists aware of the importance of being a patient advocate, what Complex Regional Pain Syndrome (CRPS) is, and the real-life story of my sister, a girl in need of an advocate due to her diagnosis of CRPS.
My personal favorite way that The U.S. Pain Foundation has helped my sister has been by declaring her a Pediatric Pain Warrior and showcasing her in their invisible illness awareness project, the INvisble project.The INvisible project is designed to give patients with invisible illnesses a platform to tell their story. Not only has Melanie shared her story but she’s heard the stories of many others and made many friends. Again, strength in numbers!
So now that I’ve talked up U.S. Pain enough, I’m sure you can tell I was so excited that one of my professors was able to open up a spot in her course to allow me to bring The U.S. Pain Foundation in to speak. It has been a couple of months of planning between myself and Paul Gileno and Nicole Hemmenway (vice president of U.S. Pain) and once we finally found the perfect date, my family and Jason (Melanie’s PT) jumped on board with planning as well.
I knew going into this that I wanted the focus to be patient advocacy, we talk about it in some of the course of my program but I knew that this angle would put more weight onto it for a lot of my classmates. My classmates have been extremely supportive of both Crazy Sock Day as well as Color the World Orange for CRPS day so I knew that meeting Melanie and hearing the story of the role her PT played in how her story played out would be impactful.
The lecture was today, it went off without a hitch! First, Paul Gileno shared his own story of chronic pain and how his pain led him to create The U.S. Pain Foundation which now is a thriving organization providing resources for thousands of individuals suffering from chronic pain. Following Paul, Jason (Melanie’s PT from way back) spoke on his experiences treating individuals with chronic pain and how it really differs from treating an acute injury. He used examples of how things went with Melanie and really painted a picture of an exemplary way to go above and beyond to provide the best care for your patient. The grand finale was a few slides prepared by Melanie… yes, this brave girl lectured to 60 doctoral students!! Melanie shared her own perspective on the importance of advocacy, as well as how amazing The U.S. Pain Foundation has been in supporting her through this journey.
The class had several questions for everyone which made me extremely happy because it reassured me that the content we put together got people thinking. Often times in our curriculum, we focus on the science of pain but not as often do we get to hear about the emotional and more personal side of pain and that side is what walks into the clinic with a patient! Overall, I feel as if this lecture allowed us as students to put down the books and look at real life stories and how we can play a role in making the stories the best they can be.
Want to read more? Click on these links for more information regarding Melanie and The U.S. Pain Foundation!