Your observation on human behavior is so true. If there is a crisis of perhaps someone needing surgery... that is a 'short term' crisis; friends rally very well to help during these crisis, knowing (at least expecting) Life will soon return to "normal".
I reflect on my own response when I was "a normal"; did I respond and assist in the way that showed understanding to someone with longterm disabilities or chronic demands? I was a nurse, so did know 'how', but did I or could I have grasped the whole impact of how chronic disease utterly and completely alters, changes, stands life on its ear?... No!...
......how can they?
Of course, we lean on those who, we may think, are with us in life's struggles, but that can turn to dust, in tragic ways, and at a time when we need support the most. This is the Downside' of human nature. If we, ourselves could walk away from this journey, wouldn't we? 'Others' have the option !
It is our job to carefully consider who we 'tell all ' to. And, to re-think our expectations of others.
This is OUR journey after all.
Now that I am an 'old ewe' I simply do not tell my closest supporters 'all things'. If/when they ask, I respond according to their 'grasp quotient'.... is this a question based on politeness? - then this requires a polite answer. If it is a more private time between friends, then this maybe a time to 'spill'.
But, most people, I have found, are not in the least medical! And therefore have no clue what you may be saying! (I am amazed at how little folks, in general, know of their own bodies!) So answers have to be tailored in ways that they will understand, without overloading!
It is a reality that as illness continues, and then begins to worsen over time, that 'friends' fade. This makes sense.... I do not belong in their world.
The friends - true friends - that will stay the course, who can listen, assist, and at times, give you that needed 'kick in the pants' are few and far between - I can count them on one hand. These are my Gem People- and i am so grateful to have these people in my life ... they choose to be in my life! with all its misery. BUT, they need to be cared for too... and that's our job!
Every question is an opportunity to 'teach', but I must also 'weigh up' against - what do they want/able to hear?' .. and most of all do not over burden them with what is my problem/ journey - both, with the listening and with the physical jobs I need done.
How do you balance that.. well, we need the wisdom of Solomon!
The journey of chronic illness is a personal one. One that belongs only to us... it is me who walks this road Finding the right supports and supporters is vital to our physical and - more importantly - our mental health and well-being, even in the deepest times. 💔
Finding those who truly 'know' and who are able to understand, and still care through it all, is so important..... that's why this 'Connect' is so wonderful. You are talking to folks who do 'know' in the core of our being!
We can supply those vital bits of knowledge with complete understanding of our battle and cheer one another on! Plus, give us up-to-date, solid, reliable medical information that is so foundational to us!
Your comment, " chronic disease is a debilitating disease of the psyche" is so true -- it's vital to keep our 'foundation' intact ! Getting therapy from time to time is a great idea, when we need that help on clarifying our situation - easing the burden. Your medical people should have good referrals to suggest! Face-to-face is the best. I have found group therapy to be so helpful.
Sending you my sincere hope that you will surround yourself with all the love, care and support you
need!