Re: Dealing With Doctors When You Have Adhesion Related Disorder (ARD)

From: cathy:- (cafasano@aol.com)
Tue Mar 4 20:49:52 2003


This is fabulous, Helen! I wanted to expand on one of your topics -- #7 about your doctor not being totally unbiased. Look at some of the characteristics of ARD:

1) ARD is almost always iatrogenic

Main Entry: iat·ro·gen·ic Pronunciation: (")I-"a-tr&-'je-nik Function: adjective Etymology: Greek iatros physician + English -genic Date: 1924 : induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures

As Helen says, the first rule of medicine is "First do no harm." For some adhesion-sufferers, their adhesions had nothing to do with a doctor. Maybe it was an infection or a blow to the abdomen. But for the other 90% of us, we have adhesions because a doctor or doctors FAILED to achieve the first rule, and did harm. Of course some cases are more egregious than others -- the person in agony from adhesions after an absurdly unnecessary c-section or hysterectomy is appalling. But even if it was the most necessary operation in the world, the operation was supposed to fix you, not break you. Even if the doctor sitting there in front of you did not cause YOUR adhesions, if that doctor has done surgery then you can pretty sure (and the doctor can be pretty sure) that the doctor has caused SOMEBODY'S adhesions.

2) ARD is basically untreatable. Sure, a surgeon can go in and cut the adhesions, but that will cause more adhesions. There are a handful of the world's very best surgeons who have pretty good odds that they can go in and do an adhesiolysis and not do more damage than they fix. A very small number of surgeons -- if you are counting them you don't need to take your shoes off to use your toes... Then there are probably a few thousand surgeons who THINK that they can do an adhesiolysis, but they are delusional. And their delusions of grandeur cause unspeakable harm to their patients. Most surgeons, it seems, are quite realistic that they themselves are powerless to treat adhesions.

So when you, as an ARD patient, sit there across the desk from a doctor, you need to understand that if your doctor fully appreciates the reality of ARD, and if your doctor has the full complement of human emotion, then the IDEA of ARD makes the doctor feel terrible. For in ARD a doctor must confront many unpleasant realities. A doctor must confront the reality that, to paraphrase Rabbi Kushner's phrase, "bad things happen to good doctors." Surgery is supposed to fix people, but it can also injure people. Even when the doctor is going in with the best intentions and the best skills and the best judgement, people are going to get terribly injured. Doctors are not God, and they cannot prevent bad things merely by good intentions. And then the next logical horrible thought for a doctor confronted with ARD is to wonder if every single solitary operation that s/he did was really necessary. And to feel guilty about every nagging little incident where the doctor cut a corner.

Ultimately ARD confronts a doctor with his/her own impotence. Doctors go into medicine to be heros -- to ride in on the white horse and rescue the patient from the horrors of disease and injury. But ARD is about the doctor whose actions CAUSE the disease and the injury. And no matter what they do, they can't fix it.

So an ARD patient needs to be constantly on guard. Most doctors handle their own emotional turmoil caused by ARD well, but some react by becoming abusive to the ARD patient who stirs up all of these unhappy emotions. It is absolutely vital to trust your doctor, but as the saying goes, "trust, but verify." An ARD patient needs to constantly keep up a certain guardedness. When the doctor says something "off" you give him/her the benefit of the doubt, at first. But you don't forget it, either. You constantly keep your wits about you and whenever you need some input as to whether the care you are getting is reasonable and appropriate you come here and run it by people here.

At Tue, 4 Mar 2003, Helen Dynda wrote: >
>X> Dealing With Doctors When You Have Adhesion Related Disorder (ARD)
>
>Having Adhesion Related Disorder (ARD) means we have to get pretty good at getting what we want out of the medical system. Yes, we have a controversial disorder. Yes, lots of people don't take us seriously. But that's no reason to despair! With a proper approach, you can go a long way in getting what you need out of doctors.
>
>There are a number of books and articles out there giving advice on what to do when you go to a doctor. They usually say things like: " Be an informed medical consumer." " Write down all your questions so you remember to ask the doctor about them."...or..." Make a list of all your medications so the doctor knows what you're taking." These are all excellent pieces of advice, and I think you should do those things.
>
>Unfortunately, these articles fall woefully short for people with ARD. A big part of this is because our ARD is poorly understood and debated even among doctors. In fact, many of us have been treated disgracefully by them. (Although, some doctors have gone above and beyond the call of duty to help us; unfortunately, there aren't enough of them.)
>
>I'm assuming here that it's very clear that you do have ARD and that you've had a thorough physical that has ruled out other medical problems. You don't want to try to push a doctor into giving you an ARD diagnosis while leaving a serious and/or treatable condition undiagnosed. Here are some tips on how to deal with doctors and the medical system.
>
>1.) First, you MUST do your homework!! It is unfair and unjust that you should have to do this when you are ill; but you will deeply regret it if you don't. Begin by educating yourself thoroughly about your illness. You cannot rely on your doctor to know about adhesion related disorder!!
>
>2.) Next, you must take your doctor visits quite seriously. It's natural for people, who are very ill, to want to go to the doctor and place all their problems in his or her hands. We all want to say: " Here, make it all better now." Unfortunately, we adhesion-sufferers often can't do this. We may have found a "regular kind" of doctor, who doesn't specialize in ARD and who doesn't know a whole lot about it.
>
>3.) You need to realize some things about doctors. First, they're folks,just like other folks -- they're not " Gods." Most of them are good people. A few are truly awful. All are capable of making mistakes; and no one doctor can possibly keep up with all of the new medical information that's coming out!!
>
>4.) Doctors are usually overworked and under a lot of stress. The office hours in which you see him/her are not the only hours the doctor is working. Doctors see hospital patients before and after office hours. They spend hours filling out forms for patients, who are seeking disability. Doctors are awakened in the middle of the night with emergency calls.
>
>5.) Doctors (at least the good ones) are very concerned about committing malpractice -- and about the good opinion of their colleagues. A bad reputation can ruin a doctor's career for life!! " First, do no harm" is drummed into doctors from the day they first enter medical school. As a result, they tend to be conservative in their judgements -- and are cautious when evaluating new medical information. This can be frustrating for adhesion-sufferers (especially when all of our diagnostic tests are negative for abnormal pathology or normal). But remember, we WANT our doctors to be careful and conscientious, so we should be willing to cooperate with them.
>
>6.) What does all of this mean? It means " the more work you do for the doctor, the more likely you are to get what you need." You need to present your medical history and symptoms clearly and concisely. If and when you bring information --that you've printed out from the Internet -- about adhesion related disorder, you need to include the Urls (Internet website address) so doctors can see that your (and their) opinions are backed up by the medical community.
>
>7.) You also need to realize that you can't count on doctors being totally unbiased -- anymore than you can count on any other person being completely free of pre-judgements. It is important to get past whatever preconceptions a doctor has and to get him/her dealing with your real medical problems.
>
>8.) And finally, how your doctor views you and your illness can make a difference if you need to seek disability.

--
cathy :-)

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