Profiling Chronic Pain with Advocate Melissa Swanson
According to the 2010 Institute of Medicine (IOM) Report, “[_Relieving Pain in America](https://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research/Pain%20Research%202011%20Report%20Brief.pdf)_,” pain care and management should be individualized for everyone who experiences pain.
The report says, in part: “Among steps to improving care, health care providers should increasingly aim at tailoring pain care to each person’s experience, and self-management of pain should be promoted.”
Is the current health care climate promoting individualized pain care and management? Celeste Cooper interviews fibromyalgia advocate Melissa Swanson on this issue.
HealthCentral (HC): Please tell us about yourself.
Melissa: I am a married mom who works full-time. I also live with fibromyalgia and many commonly occurring disorders.
My journey as a person living with chronic pain began by wanting to know more. I searched websites for information on my various conditions. I wanted to know about treatment strategies. But, I also wanted to find a place to get the emotional support we all need. Though I found some great websites, I discovered a need for creditable information and positive support. Out of my own need Fibro Warriors ~ Living Life was created. In addition to the Facebook support page, I began a website and blog. And, in August 2016, I released my first children’s book, “[_Ravyn’s Doll: How to explain fibromyalgia to your child](https://www.amazon.com/Ravyns-Doll-Explain-Fibromyalgia-Child/dp/1534931139)_.”
I am now a freelance writer on fibromyalgia, a trained [Leader Against Pain] advocate with the National Fibromyalgia and Chronic Pain Association, and a certified fibromyalgia advisor through the International Fibromyalgia Coaching Institute.
HC: As a “Leader Against Pain” do you feel today’s health care climate, affordability, and access to pain care has changed since the IOM report?
Melissa: Although the Institute of Medicine reported significant findings and recommendations, they have no power to implement them. It is up to advocate organizations and funding from federal agencies to find strategies for changing the way chronic pain is perceived and treated. There is more work to be done.
HC: What do you see as the biggest challenge for managing pain today?
Melissa: I feel the two biggest challenges facing chronic pain management are 1) overcoming barriers to accessing treatments known to work, and 2) educating patients, caregivers, and health care providers. We’ve made progress, but there is room for improvement. For instance, in order for patients to take a proactive role, they need better access and reimbursement for integrative therapies. They need self-management tools that promote an active patient-centered role in their health care.
HC: What do you see as the most important piece of advice for patients in this changing pain management environment?
Melissa: Remember that you are your own best advocate. Use your voice —speak up and be heard. “It takes the human voice to infuse them with the shades of deeper meaning.” [As Maya Angelou said in “I Know Why the Caged Bird Sings”]
HC: What words of encouragement do you have for others?
Melissa: So many positive affirmations come to mind, but this one may be the most important: “I will accept my changing lifestyle and embrace new opportunities.”
I chose the dragonfly to represent Fibro Warriors ~ Living Life because they symbolize our ability to adapt. Positive focus allows us to accept and embrace change and like the dragonfly, our transformation allows us to live a fulfilled and purposeful life.
Find out more about Melissa, how to connect with her, and follow her blog, Fibro Warriors ~ Living Life
Celeste Cooper, RN, is a chronic pain patient, freelance writer, and contributor to the Health Central Community. She is also lead author of five published self-help books and enjoys writing and advocating for people living with chronic pain as a participant in a local patient leadership group and the PAINS Project. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.