That's a good question, DQ. Good questions are always a great place to start. I don't have an attempt at discussion tonight; just wanted to highlight the question.
Also, ditto to Alex in
post #42
Thanks,
I can try and answer regarding myself and maybe it will help.
First, I haven't encountered many patients with "unexplained medical symptoms" .
My training was in internal medicine, which is mostly working on medical wards and seeing relatively ill hospitalized patients with known diseases.
My specialty is hematology, which is one of the most precise fields of medicine, so we rarely have patients with medically unexplained disease.
So, I really wasn't aware of the extent of this problem. And, even less so of the way in which it is managed.
In fact, when my treating neurologists told me in the early days of my illness, that there is nothing physically wrong with me, I was quite happy to hear that.
I only started questioning their decisions after a 3 week hospitalization (part of which was in the ICU).
But, even then, their unquestionable confidence made me ask myself if I somehow managed to confuse the ICU team and myself to think that I was truly ill.
I consulted an excellent psychiatrist and told her that I either have serious emotional problems (that make me do such unreasonable things) or all those people are a bunch of idiots. I also told her that I find it hard to believe that all those neurologists (some considered experts in the field) who have independently reached the same conclusion are idiots. She asked me why did I find it so hard to believe that they are all idiots with regards to understanding my illness.
This was the first time I learned about this tension among neurologists and psychiatrists and the way neurologists tend to attribute what they can't understand to "emotional" problems. But, I still thought it was a rare occurrence. I also wasn't sure (at that point) who is correct.
Later, I was told by another neurologist that about half of the patients seen by an average neurologist have "non-organic" diseases. I was quite shocked to learn of the extent of this problem in neurology and also of the indifference of neurologists to the fact that they are unable to explain about half of their patient's diseases. I realized at some point that they do not see it in the same way that I do- patient's who are ill and they don't know why, but as patients who are not "really" ill.
I was also surprised to see how strong those beliefs are, so that even when "objective" evidence for my illness were eventually found, I was thought (by some "leading experts") to have both. In fact, I realized that this too was not a rare occurrence. A recent study "showed" that about half of the patients with a diagnosed neurological disease, also suffer from MUS.
As my MUS happened to be life-endangering respiratory symptoms it became clear to me that I have to start being my own physician and stop trusting those who are considered "experts" in the field.
It took me nearly a year of being nearly bed-ridden and requiring frequent respiratory support. (and times in which I was not sure I will be able to survive) until I gradually managed to have some improvement in my condition so that I could even go out of the house for a few hours (with a wheelchair and my respirator at a safe distance).
I have since had a very slow and gradual improvement, but have not recovered to the extent that I am physically independent.
During that time I promised myself that I will do everything that I possibly can, so that no patient in the world will have to go through this kind of ordeal.
Although, I returned to work in my own filed of practice (very part time) I keep on dedicating some of my time and limited energy to that cause.
I know that I was overall very fortunate and had I not been a physician, I may have not been alive today.
I feel that it is my duty to understand why this happened and to find the way to do something so that less fortunate patients will be treated properly.
I know that most physicians I have discussed this with, either don't believe it (think I am exaggerating and couldn't have been that ill) , or think that this is an extremely rare occurrence, so there is nothing to learn from it in general. Surprisingly, many patients think the same.
In a way I can understand why they are reluctant to believe this-
For physicians it is hard to accept the fact that with all the advances of modern medicine such things can happen on a regular basis with no one noticing. It's like it was hard to accept that death during childbirth was the result of those physicians taking care of them not washing their hands. It was much easier to accuse Semelweiss that he was insane in thinking of something like that.
http://en.wikipedia.org/wiki/Ignaz_Semmelweis
For patients it is very scary to think that if and when they become ill they may be treated in such a horrible way. It is much easier to believe that patients who are treated like that somehow bring it on themselves.
It is also (as was for me) much easier to believe that possibly you are not as ill as you think, then to realize that you are to deal on your own with a serious illness, in which your physicians can cause much more harm than good due to their lack of understanding and ignorance.