I wrote this on Chemo_Babe's wall in response to her post about dignity:
Yes. More than "cancer patient" we are all PATIENTS. People get "immune" to the "chronically ill." It is why I am so outspoken on behalf of the chronically ill. I AM a chronically ill woman AND I watch doctors AND medical staff AND hospital and pharmacists etc etc alternately adore us AND get worn out from it all. And they can be all those things simultaneously.
I don't think our medical industrial complex has the right ATTITUDE about illness and sickness in general. I don't think we TREAT people right when we get sick. I think we treat sickness as a FAILURE of the body- and then we treat chronic sickness as a BIGGER FAILURE- even one of our spirits.
So - YES Lani- YES you did right to expect her to act like a human. And she- perhaps she was feeling like a church mouse. Perhaps she is an awkward physicist. Perhaps she HAS no real sense of social grace BECAUSE she is like that in "real life" even when she is not deal with sick people.
Honestly- most of my engineer friends have to be TOLD how to respond appropriately to "normal response" things anyway. And they often APPRECIATE it. But when you get sick a special layer comes off... People just DO NOT KNOW HOW TO RESPOND. They just don't. I'm pondering it now. Doctors LEARN how to respond with their kind friendly but NOT YOUR FRIEND indifference ... but what of YOU? What of YOUR REAL LIFE?
It is this substance that I am seeking...
How do WE reach out and truly get back into it.
I have many chronically ill friends who are angry about their particular illness. They don't think THEY are understood as well as "that illness over there"... not realizing that it has taken YEARS AND YEARS of struggle and work for any illness at all to have understanding and compassion.
Meanwhile... YES. Being outspoken and your own advocate is important. But what of the days when you're too tired to do so? What of the days when you ARE just going to lie there and submit? Because we ALL have those days? Then what? THEN WHAT?
MUCH much love to you.
I am glad you explore these ideas.
For some of us these things will NEVER go away. We are sick "for the long haul." We will be in and out of surgeries and repair jobs for the long term... and it is important to me to somehow find the sweet spot between being chronically ANGRY and being thrown out like yesterdays compost.