Ken & the 'Telling' Dilemma

[Guest guest]

Dear Ken,

I read your Posts ( & Ginny's too) about the sharing/responsiveness of family to this disease. I could feel the pain that you're both experiencing...one young person, one older... BVUT it's still the same PAIN... feeling ALONE to handle the experience & still make out to the world that all is OK when it is NOT!

Everyone decides who & how to tell ... I found it hard to decide where to STOP... once I'd let the cat out of the bag..... who was IN the loop & who was not... that became too weird..... so now everybody knows & different individuals deal with it in their own way & I just sort of find a way of taking the cue from each of them.

Most people don't deal with mortality well... Humans seem to think they deserve to live forever....we remind them that they're not going to. It's RUDE to keep on walking about with an Illness that is likely to be Terminal...its CONFRONTING to others....TOUGH I say.....we're a walking advertisment for LIVING until we DIE!

The people I find hardest are those with the 'Aren't you dead yet' look in their eye! Others have the look of Terror in case 'ITS' mentioned.... the best ones are those that give me a quick hug & say I hope you're doing as well as you look.... I also HATE the one's that say "but you don't LOOK sick' as if you've being caught telling Porkys to get attention! OMG I truly think they're the WORST!

Inside one's family you get the same range as outside....that's just how it is but hey it doesn't stop us wanting more now does it!

Hang in there you two......WE GET IT!

in Oz (aka GIO)

IPF: Fibrotic NSIP/UIP????

Raynauds'

May 2007

Ro52

May 2008