Often, when someone has persistent or chronic pain, what’s almost forgotten amidst the assessments, tests, diagnosis, and treatments, is the person. This person is not just a body with all these parts. Rather, someone who has a unique story, history, perspective and perception about what is happening with them. How pain affects almost every aspect of their life. Their worries, concerns, uncertainty about the future.
The International Association for the Study of Pain (IASP) launched it’s Global Alliance of Pain Patient Advocates in 2018, stating “this initiative seeks to better integrate the patient voice to inform pain research and its translation into new interventions to treat pain.” Below, Joletta Belton, tells her story:
I’ve been following Joletta for a long while now. Not only an advocator for the person in pain, she writes a blog over at mycuppajo, and co-founded Endless Possibilities Initiative (EPIc), which is a “nonprofit organization intent on changing the way people get access to science-based information about pain.”
Joletta also wrote the first chapter in Yoga and Science in Pain Care: Treating the Person in Pain which I’ve mentioned here before on the blog.
She writes “My protective responses not only affected my breath, but my movement too. My muscles would tense up, my joints would become stiff, my movement braced and rigid. Being rigid and stiff affected the way I moved, the way I walked, the way I sat. The way I existed in the world. The tenser and more guarded I was, the more pain there was, so I started moving less. The less I moved, the more painful movement became. Fear of more pain, of more damage, made me move even less. A vicious cycle.”
She goes on to share what helped her most over the years. The first two, on her list:
- “feeling heard and believed, supported and empowered
- feeling understood, as well as understanding and making sense of my pain.”
“When we live with pain, it changes who we are as people. It changes how we see the world and how we relate to that world. We protect ourselves through isolation and withdrawal, through guarding and tension, through altered thoughts, beliefs, and movements. We disconnect from the people, places and activities that are meaningful to us.”
“It is hard.”
In her conclusion, she also goes on to say “… I want you to know it takes hard work to get out of those dark places, too. I want you to know that change is possible, but it’s not easy. It takes time and persistence, compassion and courage.
… there is so much that is possible, so much that can be done, no matter how long someone has lived with pain, no matter how many limitations they may have.”
Jolette also recently contributed, wrote, the first chapter in the Meanings of Pain, Volume 2, released last month. The interdisciplinary book – the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk “aims to better understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them”.
In my work as a yoga therapist and Pain Care Yoga teacher, probably the most important part of my work is to listen to what the person in front of me is saying about their pain, their story, their life. Provide safety and support, work to empower the person in pain as they might learn to move, breathe and renew their own sense of meaning and purpose in the world.
If you are someone who suffers from chronic pain, know that there are people out there willing to listen. There is hope. Your pain CAN change.
Let’s all continue to advocate for, educate and push for more services and support for the 1 in 5 Canadians who need it most. Each and every person, in pain.