I belong to the MyCOPDteam website, which is a support group for people battling COPD and trying to find resources in fighting this crazy disease.
I say COPD is crazy because even the so called “experts” on the disease – the docs, respiratory specialists and patients themselves – can’t all agree on it’s causes, triggers, definitions, etc., etc., etc.; making for a rollercoaster ride of things to consider and try in order to remain healthy on a case-by-case basis.
Into these care and treatment considerations come the various personalities of the patients and their caregivers and loved ones, willy nilly, with very little opportunity to filter in or out anyone who may be unhealthy for your individual state of mind.
There are key issues to be addressed with any chronic health issue, but the most important questions don’t get addressed until much further in the online support community, long after you have emotionally engaged with an internet friend or foe and their health outcomes.
Being a crabby New Englander, I was taught that a friend, no matter how boon a companion in real life, is still an “acquaintenance” until you’ve known them and been friendly for at least five (5) to ten (10) years. What then are the rules for boundary management in internet life?
The reasons for the 5-10 year minimum getting-to-know-you period or reasonable limit is because people lie. Or prevaricate. Or put on one personality in public, but may actually be a whole other soul-sucking personality over time. Until you’ve been in the trenches with someone, you don’t kniw who they are, but rather have bought a bill of goods they are selling you about their personality.
Into this picture comes the art of real life vs. internet life, and how well one manages the graces and decorum in the troll-filled universe we sometimes inhabit in the internet determines in a big way whether or not one is a fan of spontaneous interaction. With strangers. And their relatives.
I’ve done pretty well in the 1:1 world of Better Breather Classes. I am who I am, and I participate fully. Take me or leave me, but you won’t say you didn’t “notice me”. And, we all have an unstated but clearly understood rule about manners and communication and kindness. When in doubt – don’t say it, don’t do it – keep things running smoothly and ensure everything is non-confrontational and polite. Everyone handles their chronic illnesses differently, and it’s not my business to police your interactions with others. There is no “right” way to handle how you deal with your illness aggravations and vulnerability as you age.
I’ve also done pretty well in the world of internet dating, breaking through the safety wall to meet and date (or drop) the object of my potential lust and affections. Because of the boundaries I created to protect my real world identity, few people got to be facebook-level friends as my answer was always, “No. You have my contact info on this (other) site. Until we meet in the real world and decide that we know what we want from each other in terms of public behavior and manners, we’re fine staying friends on this (other) site and not on facebook. There is no “right” way to handle how you deal with your love life and carnal desires, but I draw the line at starring in an episode of “Cheaters”, or of having your relationship drama rain all over the people in your life – online or in the real world.
So, with these experiences in mind, as I’m dealing with the bleed-thru of the MyCOPDteam friendly acquaintenances and their connections into facebook, I’m finding more things are getting on my nerves.
First, I’m not religious, so the whole “Prayer Warriors, I need your help” demand as a constant background battle cry is exhausting.
Second, we don’t all deal with the inevitable complications and end of life decisions the same way, so my diplomacy is being stretched thin as I go on facebook at all hours of the day and night, unprepared to deal with what can be endless drama in my otherwise lighthearted facebook experience by people who are chronically ill and showing their chronic illness panties – intentionally or otherwise – for all the world to see and remark upon.
Unless it’s siloed among my own family and extended family members – a place where it’s much easier to identify the landmines and avoid them through years of real-world exposure – I don’t wanna know.