i also think there is something else going on here - something far less tangible.
i think its almost like there is a kind of spookiness of lyme and chronic illness
or maybe its the fact that it threatens peoples sense of what's real in some way
i sometimes think that - its a bit like sharing something very dark and inexplicable with someone who currently has a nice life and things for them are pretty much all swimming along just fine - jobs, house, kids, hobbies - lifestyle etc.
then you give them a glimpse of what Lyme is like:
yep - i was where you were no so long ago - then one day this happened - we don't know what it is - where it came from - or how bad its going to get - but i cant work - every day is full of pain - and, just when you think you are coping, new things pop up every day or week, the tests are no good, the meds don't seem to work - and no one can tell me when it will end....
the unavoidable unspoken message is "this could happen to you too - life as you know it could come to an abrupt end"
that's enough to cause most peoples reality to dysfunction right there.
its a bit like showing them you have a mini black hole in your living room -
"Here, lets throw a chair into it and see what happens" -
"Look! see it grow, it could expand and swallow us all any moment!" and a surge of fear wells up inside them and they don't want to know how it works, they just want to be home in their own safe familiar world.
i have highly intelligent - otherwise broad minded - even intellectual or philosophical friends who i have been close to for decades - who have pulled away from this. They no longer visit, their calls drop down in regularity or they stop calling all together.
I have thought about
it quite a bit - and i think its simply so uncomfortable for most people to stare into the abys - of what could happen to them (how would they pay the mortgage, would their partner leave them? how long till they were destitute?, could they take the strain mentally?) that they would just rather not be around it.
Sad in a way - but at least this means its not personal. its not us lymies that are putting them off so much as their realisation of their own fragility and mortality.
Post Edited (Garzie) : 6/7/2021 10:21:55 AM (GMT-6)