Oftentimes we see blogs and websites about pain, rehabilitation, and exercise from various healthcare and fitness professionals. However, we don’t often read or hear stories from the patients’ or clients’ side of their experience and knowledge. Clinicians and trainers sometimes get caught up in facts, data, and and their own beliefs that they forget about the people whom they see almost daily.
Not only do these people have chronic pain (or have conquered their pain), but they also have a high interest in understanding their nemesis. So in no particular order of favorites, these four blogs deserve a regular read and share to understand what is going among those who are or were in chronic pain.
My Cuppa Jo
Many people who had suffered an injury sometimes go through a merry-go-round of treatments and therapies that don’t seem to work well or at all for them. This seemingly never-ending cycle of seeking a cure can eat up their time and energy that could be better spent elsewhere. Joletta Belton, who is a former firefighter currently living in a small town in Colorado, suffered from chronic hip pain after stepping off a fire truck in 2010.
I first met Joletta in person back in December 2015 in Carlsbad, California, at The Chocolate Bar where we shared our stories about our pain experiences and our colleagues and friends we know on social media. I still see her every year at the San Diego Pain Summit as well as quite often on Facebook in various pain science groups. For a non-manual therapist, she has quite a “voice” in explaining pain!
An easy-to-read series of essays that follow parts of her journey to acceptance and learning to live with pain, My Cuppa Jo gets readers inside of Joletta’s head to get an idea about what she feels and thinks about pain and how modern pain science, mindfulness, and creativity help her during periods of hardships. The human body is more resilient and adaptable than many people believe, and looking for “the cure” is not always the option — or only option.
How many women do you know who proudly proclaim, “I’m 30+ pounds heavier and sooo much stronger!”
A nonprofit group that focuses on pelvic pain among women, this uplifting site not only breaks down myths and taboos about pelvic pain, but also encourages women to share their stories about their pain and their journey with it. Founded by Erin Jackson, who is a healthcare attorney practicing in Chicago, Illinois, Inspire Santé reaches out to women by setting up education workshops about various topics, including sex, personal empowerment, and dealing with gender discrimination in healthcare. Like My Cuppa Jo, Inspire Santé combines science, patient-centered care and advocacy, and individual stories to create a rich sense of what people are going through when they have pain that they believe cannot be “cured.”
I met Erin on Facebook via the matriarchs of Entropy Physiotherapy & Wellness where Dr. Sandy Hilton treated Erin and her chronic pelvic pain. After battling with pain for about ten years and having seen many therapists and doctors, Erin found regained her locus of control of her pain with the help of Dr. Hilton, which enabled her to live and move with no pain.
Erin is also currently working with Massage & Fitness Magazine as a writer, covering legal issues that many massage therapists often ask on social media.
“What room is there for pain when your brain is busy with wonder?” ~ Kris Leong
A multi-talented artist and former belly-dancer, Kris Leong is a recent addition to my growing list of blogs to follow after we met and chatted online about two weeks ago. Originally from New South Wales in Australia, Kris currently resides in Amsterdam, Netherlands, after having backpacked around most of Europe for a few years in the 2000s. In the late 2000s, CRPS (complex regional pain syndrome) “took” her legs and later her right arm, rendering her requiring assistance to walk and remain independently mobile.
Despite what happened, Kris remains quite resilient and has adapted ways to overcome what the disease had wrought, including a superhuman skill of drawing a self-portrait with both hands simultaneously. That is mad ambidexterity! While I am still new to her blog and have only read two of her recent stories, Kris offers therapists like me a general idea of what may be going on in some patients’ head — the struggles, triumphs, falls, and wonder.
What I love about these blogs is that I get to sense the “human” side of the story of pain. When your client or patient walks into your clinic with pain, what do you do? Give him form to fill out and go on from there? Tell her your narrative about why she has pain? Would you behave and communicate differently if you know more about him or her as a person rather than just a bundle of muscles, fasciae, or even nerves?
Together with my understanding of pain, these stories help me do my work easier — far less complex than what I was taught or believed. No special gadgets or techniques. No Eastern mysticism or outdated narratives attached. No clingy reliance on the therapist.
Just an open ear, mind, and heart with a dose of touch. Sometimes it’s as simple as that.
Do you have a favorite blog that I should read relating to the patients’ perspective on pain?