“Pain is a Community”

To begin, living with chronic pain is not something you can imagine living with and have any real sense of how you will cope with it, or how it affects every aspect of your life and the lives of those closest to you. The first time I met with my neurologist there were a few other patients waiting and each looked as if they were slowly dying with blank stares and puffy dark eyes, each seemed to be resigned to their fate. I remember thinking they were probably all cancer patients with a short time to live and felt glad that I had a treatable though painful disease and resolved to remain upbeat and cheery no matter what.

The first time I visited a chronic pain (CP) forum was about 18 months later, just after learning the 2 bone grafting where failing already and I had only been walking unaided for 3 months. Up until this point I was certain I would continue to recover and eventually be pain free. While hope for eventual recovery remained, the enthusiasm and almost obnoxious optimism evaporated into the realization I would need total hip replacements (THR) at 29 years old. I finally joined the group and made my inaugural post after meeting with one orthopedic surgeon who said he wouldn’t consider me for THR for another few years and 5 others who wouldn’t even see me because of age regardless of need. Already prescribed twice the maximum dose of the strongest non-hospice pain medication, and crutching around on one partially collapsed femoral head, the other with a fracture running through it, I could feel the jagged bone gouge into the joint causing more swelling and more pain. My friends were all off doing the activities we previously had in common and being completely isolated most of the time I turned to this online community for answers, help, friendship, and support.

What makes this group a community is the understanding and acceptance that comes from other CP sufferers, and the willingness to help others in any way they can. Helping out a newcomer with information links or a word of encouragement puts the focus on something other than you and helps drive camaraderie and goodwill. The basic group need is the mutual understanding of what you’re going through, interests vary but have a foot in service and recovery, and values range but most find that love and respect are cornerstones.

Differences and tensions don’t really work against community cohesion and if someone is having a particularly bad or grumpy day the policy is kill ‘em with kindness. CP doesn’t discriminate and whether white, black, young, or old, its steady erosive affects on mind, body, and spirit, generally isolate sufferers from physical relationships and the opportunity to meet online is a life changing opportunity for most.

I fit into this group as a member and fellow person living with chronic pain. Adding experience, references, encouragement, and if required transportation for other members less able. Who would want to be a part of this group? You have to be in long term pain to even find yourself there and most people don’t go looking for that kind of thing. Seriously though, the majority of the people who stick around and support the community would give you the shirt off their back and then thank you for the chance of letting you have it. Hopefully you don’t find yourself in need of membership but you will be glad to be once you are.