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.