No matter your character before you got sick—even if you were always an extreme extrovert and life of the party—chances are as your illness progressed and the more you were trapped within the confines of chronic pain, the more you also changed. Pain changes people and by necessity many of us become more socially withdrawn than we otherwise would be. The demands of managing the physical aspects of pain leaves us drained, the challenge of having every thought and dream and basic desire dominated and limited by pain shrinks our horizons, the imperative of avoiding, eluding, pacifying and diminishing The Pain truncates our lives and displaces the basic human concerns like eating and communicating (let alone higher aspirations like succeeding or self-expression).
Increasingly alone, not by choice or intention, but as an unfortunate result of a cascade of circumstance; too many declined invitations, difficulties in explaining just how different our lives are, friends displaced by medical appointments and playing catch-up on chores, too many special needs for a simple group outing to sustain…all snowball into a shrunken social calendar and reduced human contact.
And so we tend to disappear.
Not only are many of our ailments invisible, our shifted frame of reference slowly pulls us from the fabric of society at large and we fade from public affairs. It is possible to get out and be in the world, but the cost of doing that is for many of us too high in the long term. Wincing, jaw-grinding, limping and grunting (as I do to cope with the war inside) in public can draw the wrong kind of attention. Overly kind people want to call ambulances, some folk stare and some folk look away. One becomes an “other” to be swept away and dealt with somehow. It can heap alienation on top of isolation. Not much spare mindspace for that inside. All. This. Pain.
Thanks to the internet we have found each other and have a place where we are seen, a community in which to be woven and witnessed, a place to sink into our commonality and shared perspective. Rheumatoid disease groups proliferate, both with increasing reach and depth (like CreakyJoints) and burgeoning niche appeal; a place for athletes with rheumatoid arthritis, a place for singles with Sjogren’s Disease, a place for comedy about Crohn’s Disease.
The community of patients is gathering strength as we gather online and support each other. It is reason for joy and a lot of hope for us. Not only are we gaining from new friends and information in our chatrooms, but we are gaining strength in numbers and beginning to be able to flex our collective muscle out there in the world of “norms”, you know…in the Real World where the pain-deficient and casually-abled hold sway.
My recent blog for CreakyJoints on the unfortunate, growing divide between doctors and chronic pain patients on the challenges chronic pain patients face in the medical maze elicited many comments about feeling mistreated and dis-empowered in the current healthcare system with a general sentiment that things sure could be better. (!)
A while ago on some message board or other someone fantasized about what it would look like to have all of us out in public en masse with all our chairs and walkers and differences, the invisible made visible.
On a whim I bought the domain ParadeofPain.org just in case we get a serious yen to organize and develop a cohesive set of requests to submit to relevant State and Federal entities on behalf of chronic pain patients in a public and united way. (In my search I stumbled on The Million Gimp March scheduled for October 14th 2016 in Washington DC to highlight the obstacles to employment affecting the disabled community, and was heartened by the strides in advocacy we are taking separately and together). Perhaps someone already has this project up and running, in which case I’d be happy to get on board.
Otherwise, let me know how this idea resonates with you. Please feel free to leave your comments below or email me at: [email protected]