Wednesday, February 20, 2013

You can't talk the talk, if you haven't walked the walk.

While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.

A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.

One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.

I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.

Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:

"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."

So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.

1 comment:

Andrea said...

OMG, you have said perfectly (publically) what I have been saying (privately) for years & years & years!

I graduated from nursing school in 1980 & went right into the specialty of obstetrics. I had my first baby in 1982 & let me tell ya.... back labor took on a whole new meaning once I had experienced it. I was always sympathetic & helpful to women with back labor & they told me they couldn't have "done it" without me. But I didn't truly understand until I had it myself.

That's why I loved my hypertension specialist (who has since moved away from my area *sigh*). I've had hypertension (the disease... not the symptom) almost all of my adult life & so did my specialist. He said things to me that no other doctor would say because... well... he knew we spoke the same language and were on the same page. My last appointment with him, he looked me in the eyes and said:

"You know, Andrea... people like us don't live much past 60. So remember that every year you're given, past 60 years old, is a gift."

I'll soon be 57.

All other doctors I've had, before & since, don't even come near to that honesty. Not anywhere close.

"You have to have been in the hospital bed...." is what I say. It doesn't mean that you're total inept if you haven't been though & it doesn't mean you can't do a great good if you haven't been. It just means that you can't totally & utterly understand perfectly, if you haven't been.

I'm in the process of dying too. Despite multiple medications my blood pressure readings are awful & have been for years. A stroke is coming... it's only a matter of time. Evidently a short time, from what my specialist said. Yet if you're not bald from chemo & you're not using a cane or wheelchair & there's no MRI or CT scan results proving you're dying... well... then there's no ribbons for you & no walks for you & no charity events for you.

You simply live & then one day die... and when people come to your funeral they say: "She probably had a stroke. I think she had high blood pressure."

Bravo to you & this article--Andrea
XOXOXO