"My experience has led me to believe that health care providers
should expand the ultimate goal of care from 'restoring the
integrity of a body and/or mind” to “repairing the integrity of
a life.'
When chronic illness prevents a patient from engaging
in previous identity-defining activities, health care providers
can help patients identify and foster interests, skills, and
strengths that are still possible within their illness-related limi-
tations. This can help reshape identity and rebuild meaning.
Helping patients identify societal barriers to participation and
looking for ways to overcome them can also help accomplish
this. As a health care provider, asking 'What role can I play in
helping this individual reach the best quality of life possible?'
can open new possibilities in the provision of care."
The quote comes from Dr. Shah's writings on her own illness and how it changed her own life path forever.
It is especially important that a new way of looking at these chronic diseases should be found because these things never get better; they are life changing and forever.
So, if you should be tempted to tell someone you know, who has been diagnosed with either CFS or Fibromyalgia, they cannot just give up trying to be themselves again, you are basically telling them something akin to that if they had lost the sight in an eye, that they should just try harder to see out of it.
A while back when a discovery of a possible link to a mouse retro virus that infected the brain was announced, I was hopeful that all the "snap out of it" boneheads would get the message.
From reading at Ravelry, I see that they are still out there, giving opinions and judging others like me as slackers. Here. You come take my pain and I'll take over your life, ok? I want to hike, climb Mt. Whitney, ride my bike-something that I honestly thought I would do for the rest of my life- and keep a spotless house and charming garden and pour ceramics 'til I'm an 80 year old.
Here, you can have the fatigue,and the Myalgia.
I wish I could agree, but after four years of pain that left me unable to stand long enough to cook a dinner or walk through a store, I can unequivocally say that the health care providers that worked with me throughout unilaterally failed to listen to me carefully, misdiagnosed frequently, and showed absolutely no sense of urgency in resolving m difficulty. As the doctors became more specialized, they had less time for me, and increasingly less interest in what I had to say. Unfortunately, given that for years I could find among them no real interest in actually helping me, I would say that one would probably have to figuratively [or perhaps literally] twist arms or threaten lawsuits around here [Florida] to get anyone to help you do something as exotic as "help patients identify and foster interests, skills, and
ReplyDeletestrengths that are still possible within their illness-related limitations." Perhaps it's just the standard of care...
On second thought, I'm sorry for grousing. I was jealous of the care you discussed, and what you wrote toched a nerve. I wasn't even on your topic...
ReplyDeleteI hope you had a great Thanksgiving!
Hi Harry!
ReplyDeleteLove the avatar.
Please don't feel you need to apologize as I believe that one good grouse deserves another. ;)
Therefore, I am glad you did write your own thoughts on your doctor's and specialist's care, or lack of it, the misdiagnosed illnesses that sent them all haring off on the wrong tangents, as well as tussles with incompetent or less than caring doctors who wouldn't/didn't listen to you.
Dr. Shah was treated to the other side of the coin, as in, "Now that your illness has a name, let's treat you like a lab rat and try all this stuff out on you." She had enough and just wanted to learn to live well with what she had left. Her illness was actually diagnosed early on, and then every experimental latest
"miracle in the mice" was suggested to her to try.
My own path to the "here and now" of "where I'm at" is littered with such bone headed doctors, specialists, and ex-friends.
The doctors at THE seminal (late 60's early 70's) care limiting HMO -the one who first created the idea of health care AS A PRFIT MAKING BUSINESS- treated me like a hypochondriac, and that's why it took 25 years to get a proper diagnosis at a great Clinic, Scripps, when England was way ahead of our medicos on this "thing that now has a name".
I still tend to blame some significant, pivotal event in the environment - Strontium 90?- for setting off this "time bomb". Maybe that's where the retro viruses were produced? God only knows, as far as the layman is concerned.
There's my second little rant. :o) I say, rant away, it does something good when you assert yourself in the face of mistreatment at the hands of those who think they know all.
And thank you. I hope you had a great Thanksgiving, too. We did.