Here is a quick exercise for you: If you are currently in the workforce, think back to the last time your boss gave you a complex task that you were having trouble solving. No need to think that it has never happened to you, because of course it has. Even after working in my field for 16 years, I sometimes come across problems that I just cannot figure out. I will sit at my desk for hours (as Colleen knows) trying to come up with solutions to things that one phone call would probably solve in a matter of minutes. But a lot of humans aren't built that way: We are given a task, we want to solve it. We don't want to have someone else solve it for us. Of course, sometimes that is inevitable - you reach a point of no return, a point where you have two choices: Throwing your computer out the window or asking somebody for help. You likely wouldn't call your boss and tell him or her that the problem is unsolvable. We dig as deep as we can until the project you were given is completed.
Of course, in the world of business, we are connected in ways that makes this easier - you may have a colleague in Europe that you can send an Instant Message to, getting an immediate solution to your problem. You can send out a group e-mail to literally hundreds of people in a matter of minutes and get dozens of potential solutions. You have Google, Yahoo, specialty message boards - you name it, it exists for you as a resource. Bottom line is that even though everyone wants to solve a problem by themselves when it is presented to them, you still have so many different ways to communicate, to research, to make your job easier.
Now, let us turn to the field of medicine - a field that supposedly is one of the most important fields you can actually enter in life. You aren't solving problems to make sure the company books are lining up. You are solving problems that could go as far as saving a human being's life. You go to school for years to earn the degree, you have some successes along the way, and rise to the top of your profession in the best case scenario.
And here lies the problem: I can get a computer programming solution in a matter of minutes by typing a few keywords into a Google box, or by simply sending my case to a bunch of people in my field for solutions. Why, exactly, can't doctors do the same thing? When you are seeing multiple doctors trying to figure out a solution to your problem, why must you go through your case history 5,000 times - inevitably leaving things out along the way, causing confusion because one doctor shows you complained about one thing, while another shows you complained about something else? In this world of technology and being able to get a real-time batting average on a baseball player the moment after he lines a single to left, why can't a doctor enter something into a computer that instantly goes to all of the other doctors you are seeing? Would that not potentially lead to more "A-HA" moments in the medical field?
Instead, we have a system where we see one doctor at a time - all with their own specialty, many of which not caring one bit about what other doctors you have seen are telling you. Isn't there something fundamentally wrong with that? I do understand that an endocrinologist is not going to know everything there is to know about your digestive system, and the opposite way around. But why can't a DOCTOR - at the core, that is what you are, after all - sit down and just listen to everything you have to say? Take good notes, type them right into the computer, send them to other doctors, see if anyone can look at the case history in total and come up with some ideas? Why does my wife have a million medical records sitting around in a million different offices, hardly anyone knowing a thing about what other doctors have done? Why is it all the responsibility of the patient to keep all of this stuff organized? And how exactly did we get to this point? The point where my wife lost a year or two of her medical history because Hurricane Sandy wiped out the charts at the doctor's office? Should this not be entered somewhere safe, where anyone with a mouse and a password can access it at any time?
We had another appointment in Philadelphia on Monday - and it simply did not go well. The doctor continuously asking Colleen questions she has answered many times before in his office. The doctor refusing to really listen to what Colleen was telling him - a doctor who used the old fall back line of "Are you sure this isn't in your head? I have seen it before!" Of course, you have - you have seen it every single time you didn't have a solution to the problem - the easiest solution to every problem is blowing it off. Think about the exercise above: When your boss gives you something hard to do, would it not be the easiest thing to delete the e-mail and have a piece of pumpkin pie instead?
Isn't the BEST way to solve Colleen's problem by sharing information with as many other doctors as you can possibly find, instead of suggesting we take a trip half way across the country to see someone else? Why not consult with these experts yourself, share all of the information in Colleen's history, and try to come up with ANYTHING that can explain her problem? Even if you CAN'T, the effort would at least be appreciated by the patient. If you need us to sign a waiver for this, we'll sign it - I don't care if the janitor down the hall looks at it at this point. He or she may come up with a better solution than what we have run into.
To all of the chronically ill people reading this, remember: It is NOT in your head. Don't let a doctor convince you otherwise - to be exact, being told that and thinking about it will indeed make you sicker, because you will convince yourself that it is in your head. The doctor is the expert, right? No, not always. Some of them are arrogant, some of them make you feel as if the diploma that is hanging on their wall came out of a box of Cracker Jack - though even those diplomas at times may feel as if they have more merit. Never let a doctor convince you of anything - if you go to a deli and order roast beef, are you just going to trust the butcher's instinct when he hands you a pound of turkey? Of course not - you will hand it back, and tell him to fix the order. The same goes here - don't just accept the turkey. Tell them they are dead wrong in their analysis, and no negative test is going to prove otherwise.
As frequent readers know, I am not just a loved one of someone with a horrible illness - I dealt with one for years myself. I don't remember if any doctor ever gave me the "Are you sure it isn't in your head?" speech, but it probably at least entered their minds. As it turned out in the end, it was proven it wasn't in my head. I will bet that for 99% of you, it isn't in your head either. It can happen - don't get me wrong. But if you KNOW deep down in your heart and soul that your brain is not causing you to be sick, fight it - and don't ever give up that fight. Ask loved ones what they think - especially those around you most often. I told Colleen this afternoon that if I thought this was in her head, I would tell her that. But I have no reason to - because I have seen this first hand, and I know for a fact this is a physical illness that has attacked her. Whatever that illness is, we have no idea - nobody has any idea - and the frustrating thing is that SOMEONE out there may have an idea. Finding that person is impossible, however, because the system is broken and has been for a very long time.
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