PAI, Internet and Physicians

[Guest guest]

I have been reading a few posts that advise we inform our

doctors about the PAI support board. While, in my heart I

wholeheartedly believe that this is a worthwhile thing to do, I

know from experience that if a patient brings this up with doctors

they lose a lot of credibility.

I experienced this most recently in Indianapolis....during my

appointment a very sarcastic comment was made when I

mentioned that I was referred to that doctor by many members of

this board. I have also heard war stories from others that any

mention of using the computer to either find information or share

experiences is seen as " obsessing " . I am wondering if this is a

new category that doctors use to evaluate the character of a

patient...that is, when deciding how genuine the complaint is, I

am getting the impression that if a patient mentions " computer "

or " internet " that this is listed in the " hypochondriac " symptom

checklist. However, I also think that this is correlated to the

physician's own famliarity with computers and resources on the

internet. Doctors that I work with....at least the younger

ones....who are computer literate, tend to see the internet as

helpful rather than harmful and will take into consideration

information that patients give them concerning specificities of the

their illness.

Ironically....I get that same skeptical look when I mention

information gained from the same medical journals that these

physicians are either editors of, or contributors to! It is just that I

read them from an on-line library that my employer subscribes

to! I think that it is the mere mention of " computer " that creates a

knee-jerk reaction that this patient is " looney " .

I am not sure how universal this attitude is, and I do not want to

discourage anyone from disseminating needed information....I

just want to caution you and maybe start a dialog to see if

anyone else has run into this phenomenon. Maybe this can be

something to address in the upcoming symposium.

Laurie

[Guest guest]

Laurie wrote:

> I have been reading a few posts that advise we inform our

doctors about the PAI support board. While, in my heart I

wholeheartedly believe that this is a worthwhile thing to do, I

know from experience that if a patient brings this up with doctors

they lose a lot of credibility. (snip)

I am not sure how universal this attitude is, and I do not want to

discourage anyone from disseminating needed information....I

just want to caution you and maybe start a dialog to see if

anyone else has run into this phenomenon. Maybe this can be

something to address in the upcoming symposium.

Laurie,

This is something that I've run into, also. When I told my first GI

of my internet searches for information about chronic pancreatitis,

and the discovery of an internet support group, he scoffed at me, and

said that the internet was full of misleading and incorrect

information. As for the " internet support group " , yes, he made some

negative remarks about that and said it was probably full of a bunch

of hypocontriacs (s.p.), who wouldn't know anything of value. As time

progressed with this physician, I learned that he didn't only wanted

me to know what HE told me, and he was very resentful of any medical

knowledge I picked up from other sources. Very God-like complex.

At the time I was devouring information from the National Pancreas

Foundation, Hopkins GI website and MUSC Digestive Diseases

website, and ....hardly what you would classify as " misleading and

incorrect information " ! As for the support group, well, you've been

here long enough to know how crazy we aren't. So with that doctor, I

never discussed my findings and research I gained through the internet.

After I fired that GI and found a new one, at first I was tentative to

mention my participation with this support group, or my ongoing

internet research about pancreatitis, the surgeries, diabetes, etc.,

and I didn't say anything about it. On my third or fourth appointment

with him, he gave me a several page medical article about pseudocysts

and chronic pancreatitis -- that he'd printed out from an internet

medical website called UptoDate.org, that he subscribes to and uses

all the time. The site is excellent, and has a public section where

you can get some information, but any of the more detailed

professional information is for subscriber's only. The information he

gave me, naturally, was from that section. I was thrilled to find

such a liberated physician, and told him about my own research on the

internet and of my involvement in this support group. He thought it

was fantastic that I'd found a source to discuss CP with. After that,

he's often challenged me to find more medical information about my

disease, and encouraged me to bring in copies of anything I thought

was of value.

So, there are two sides to that coin! You just have to tread

carefully until you know how liberated your physician is. With other

doctors that I've had to see, (Endo, Pain Managment, etc.), I've only

mentioned the PAI as my " support group " , and never said a word about

it being on the internet. I've found that if you tell them you're in

a support group, without mentioning where it is, they think it's just

great.

Perhaps this will initiate more discourse on the subject of our

credibility.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

South Carolina State Rep.

South Eastern Regional Rep., PAI

http://www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are from personal experiences or opinion

only, and should not be a substitute for consultation with a medical

professional.

[Guest guest]

Rupesh wrote:

(snip) He also added that this board should only be the place

to getting different openions and options, and they

shouldnt be practiced unless you consult with your doctors.

You already know that we support this precaution. This is only a

place to share personal experiences and help educate each other, and

all members are encouraged to consult their medical professionals with

any of their medical concerns

..

(snip) doctors in Nepal, (I dont know aobut other countries) are

always too bussy to explain the patient their disease, cautions and

things in details. For eg. they just say, Dont eat exessive fat, just

that.. they dont explain the reason why..

haha! Nepal may be on the other side of the globe, but your doctors

there are not so different than many of ours! The practice of

medicine appears to be one requiring many long hours and too many

patients to deal with within normal business hours. Many doctors here

don't have enough time to fully explain everything the patient may

want to know, either! That may be a universal problem, yet I know

that now many doctors are hiring Physician's Assistants (P.A.'s), and

once these professionals are fully trained, they can offer the patient

more face time, education and instruction that the doctors don't have

the time for.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

South Carolina State Rep.

South Eastern Regional Rep., PAI

http://www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are from personal experiences or opinion

only, and should not be a substitute for consultation with a medical

professional.