Continuing my series of literary retreads, here’s an essay that I wrote nearly five years ago. If you remember my comment last time about the various kinds of perdition faced by the chronically ill, you might have wondered what I meant by “the hell of being given no diagnosis at all.”
This piece might begin to explain what I mean.
“There is nothing wrong with you….” Those six simple words have left more sick and disabled people in despair than the American Medical Association could ever imagine.
Picture this: You’re sick. Say, for example, that you’re having constant, unremitting diarrhea. You’re dehydrated and fatigued all the time. You’re missing too many work days. You don’t have a social life anymore because you’re too tired and too embarrassed by your bowel problems.
In desperation, you arrange a series of medical appointments and tests, some of which require elaborate and exhausting preparatory procedures. After making it through this difficult obstacle course you go to visit the gastrointestinal specialist to find out what’s wrong with you. And what does this white-coated exemplar of medical wisdom say to you? “Well, Ms. Poorsoul, you’ll be happy to hear that there’s absolutely nothing wrong with you!”
Then the idiot doctor looks surprised at the expressions of shock, horror and sorrow that parade across your face. “Well, surely,” he says, “you’re happy that you don’t have a life-threatening condition, right?”
And you sit there, overwhelmed, confused, and crazed, having not a clue what to say to this person. You fight to hold back your tears of frustration and anger until you get out of the doctor’s office. Once in your car or in your home or in a dark corner of some convenient diner, you sob like a little kid. And you feel guilty for sobbing, since it certainly should be wonderful news that you don’t have cancer or something….
This would never happen to any of us, if only we better understood DoctorSpeak. DoctorSpeak is not English, and it is based on the premise that specialists do not treat people, they treat systems. In other words, in the above example, your gastroenterologist does not see a person walk into his office — he sees a gigantic intestine.
He examines the Giant Colon. He extracts blood from the Giant Colon and sends it off for laboratory analysis. He schedules tests on the Giant Colon. And when it’s all done, he announces that the Giant Colon is Just Fine, which means that it is not overrun with Cancer or some other Interesting Disease. It is all that such a doctor can do not to sigh as he tells you that there is nothing wrong with you — the Giant Colon.
In the real world, of course, there are not all that many Giant Colons walking around (although some might disagree when it comes to Giant Rectums). We’re used to thinking of ourselves as people, who have complex bodies and symptoms and lives. We have this silly expectation that doctors will help us understand why our bodies are causing us so much pain and unhappiness.
But you do not have to leave the doctor’s office feeling frustrated, hurt, angry, or disenfranchised. Simply remember that to some of these fools, you’re nothing more than a single body part. And all that they can tell you is whether or not they can find something wrong in that particular body part or system.
So, for example, if a hormone problem were causing your diarrhea, the Colon Guy would tell you that nothing was wrong. Or if you were having agonizing knee pain caused by the early stages of inflammatory arthritis, the Orthopedic guy could only tell you that nothing is mechanically wrong — he doesn’t “do” rheumatic ailments. In either case, this doesn’t mean that nothing’s wrong — it only means that there’s nothing wrong within the very limited aspect of you with which that particular doctor is willing to deal.
Understanding this point will make your travels through the medical system much less frustrating. Just say to yourself, “Okay, now it’s off to see the Eyeball Guy.” And whenever he or she speaks to you, substitute the word “eyeball” for “you.” Then whatever is being said will make much more sense.
Another way of understanding the words, “There’s nothing wrong with you….,” is to hear them as, “Nope, I’m not the one stuck with you. Get out of here — I’m passing the buck.” That, too, can be a useful translation.
Unless you’re lucky enough to have a single, uncomplicated disease that looks and acts just like the disease as described in a medical textbook, you’re probably going to have to see a whole bunch of specialists. And they will pass you around like a hot potato. It’s best to prepare yourself mentally for this so that it doesn’t take you by surprise.
Whatever you do, try to keep things in perspective. Try to remember that you’re not alone. Thousands and thousands of people every year feel just as demeaned, dehumanized, and dismissed as you do by those six simple words.
Copyright © 2004, 2009 by Candace L. Van Auken. All rights reserved.