Have you been wondering why you often see a tiny plush rabbit in my photos? His name is Max, by the way ,-) Max is my little cycling and CRPS awareness-raising buddy.
He also, more generally, helps me to increase awareness of chronic pain conditions and rare diseases. Why both? Because CRPS, short for Complex Regional Pain Syndrome, is considered to be both a rare disease and a chronic pain condition.
Obviously Max can’t talk, but he does help me raise awareness by starting conversations! When I go for bike rides, I have to stop often because of severe pain and other symptoms of CRPS. Rather than simply standing around during these rest stops, I look for beauty in nature and snap photos with my smartphone.
Most of my cycling routes are through forests or along the shore of lakes and rivers, with plenty of scenic vistas. So a few years ago I had the idea of bringing Max with me on a ride, to take a scenic photo of him to share with family and friends on Instagram.
He’s so small that he fit right into a pocket of my cycling jersey; that strange-looking type of shirt – with pockets across the back – often worn by cyclists. That first photo of Max got such a good reaction that it sparked an idea…
My CRPS stops are often in areas popular with other cyclists, so I could bring Max with me and pose him for photos. To see whether anyone would ask about him. Sure enough, that idea worked!
As you can imagine, I get some strange looks for taking photos of a 2″ tall plush rabbit ‘-) Most of the time, though, someone will wander over to ask what I’m doing. And that’s how Max raises awareness of CRPS, by starting conversations!
I’ll reply that I’m taking photos for disease awareness images and flyers, which almost always leads to questions about CRPS. If the person I’m speaking with is also a cyclist, I’ll mention that certain types of common biking fractures are known to trigger CRPS. If not, I’ll ask what types of sports they – or their loved ones – like to do; then I’ll try to give them some relevant examples of situations that could trigger CRPS from those activities.
It always surprises me how interested strangers are, in this strange disease. They’ll often ask really good questions; about what it’s like to live with CRPS (very difficult!), whether there’s any genetic predisposition (suspected, but not yet confirmed), if anything can be done to prevent it (yes, by treating fractures differently), and so on.
Sometimes people will even ask to pose for a photo with Max, using their own phone; he loves it when that happens!
During our stay-home vacation this week, my husband and I have been doing even more biking than usual. We bike separately, because I can’t ride a road/racing bike with only one hand, so we’ve been meeting up for coffee and cookies at local cafés during each ride.
I take a photo of Max, with our coffees and snacks; if the café has an Instagram account, I tag them when I post the photo with the disease-awareness hashtags.
We’ve stopped most often at a local Italian-style trattoria, which is on our way home. It’s a combination bakery, deli, and grocery which also serves delicious home-style cookies, pizza, sandwiches, and hot meals to go.
Yesterday, one of the co-owners of the trattoria told me that he’d looked up CRPS. He’d seen the hashtag in an Instagram post of Max’s, on which I’d tagged the trattoria. He’d Googled the disease, and “was blown away by the descriptions of the symptoms. By the level of pain that it causes.” And by how little is known about CRPS.
I was touched that he had taken the time to read about CRPS, to try to understand its impact on a person’s daily life. Also because he told that he’d talked to all of his family and friends about CRPS, about what signs and symptoms to look out for after a fracture, surgery, or other physical trauma.
And that, folks, is how Max helps me raise awareness of CRPS, chronic pain, and rare diseases. He sparks interest, and that interest sparks questions.
When someone is provided with an opportunity to ask a question, and to discuss the response, I believe that they remember this much more clearly than anything that they read – or see on a poster or social media image. That social interaction helps cement newfound knowledge. Their new awareness.
As always, thanks so much for reading! I’ve had to disable the comments feature on the blog, after repeated hack attacks, but feel free to reach out via Twitter or Instagram. I love hearing from you!
CRPS information:
Complex regional pain syndrome. NHS (National Health Service) England – Health A to Z. Department of Health and Social Care (DHSC). Updated 29 April 2019. Online. . Online. Accessed 19 Jul 2019. Web:
https://www.nhs.uk/conditions/complex-regional-pain-syndrome/
Complex regional pain syndrome. MedlinePlus; Medical Encyclopedia. U.S. National Library of Medicine. Updated by Joseph V. Campellone; reviewed by VeriMed Healthcare Network, David Zieve, Brenda Conaway, and Editorial teams of Medline Plus and A.D.A.M., Inc. Updated 27 Feb 2018. Online. Accessed 19 Jul 2019. Web:
https://medlineplus.gov/ency/article/007184.htm
