After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Medical Politics? The Rules Of The Game

Medical Politics? The Rules Of The Game

Being a patient with chronic illness means you have entered the medical political realm. Medicine is politics, and there are rules of the game.

First, while I say, “medicine," I am not defining medical treatment but doctors, nurses, office staff, and the team of specialists that chronic illness patients are forced to have. The “team” requirement is partly from the fact that most of us with chronic illness innately have more than one illness, and thus requires multiple specialists to treat each one.

While many (if not all) medical centers tout the “team” approach, (used as freely and unsubstantiated claims as “all natural” is required in the food business), very few actually have a coherent way to do this. Thus it becomes up to the patient to be the expert, the overseer of their case and know what all specialists think, treat, and outlooks are.

Big job, right?

Yes, it is, and the only thanks you get is dependent on the (hopefully) improved quality of life you gain from making sure everyone plays nicely together. When multiple diseases are at play, “complex” is a word that tends to be bandied about. When multiple diseases that make no sense come together, “complex” and “complicated” are considered understatements.

Which is when knowing the rules of engagement are key. Here are my top five:

1. Be an expert witness, not a victim. This sounds harsh, and it is. Doctors do not like to hear emotional accounts of what you have experienced. They want facts, preferably in chronological order with specific dates, treatments, symptoms, all carefully but quickly organized.

2. Take care to be the expert witness but not the actual expert / doctor. It's a fine line not to cross, of knowing the minute medical detail but not actually coming across as knowing what to do with the information or being more informed than the doctor you're seeing. This, I think, is one of the most delicate lines to walk, as the more experienced you are in your disease, the more you know, and can often make you feel like an equal in your own case. Doctors generally do not like dealing with their “civilian” equals.

3. Compartmentalize your emotions like a skilled wit rather than a Shakespearean actor. As an expert witness you are required to show no emotion, no attachment to the case when sharing your knowledge. But there comes a time in the appointment (hopefully, usually), when the Doctor looks up and realizes belatedly that they're dealing with a human being whose life has been impacted by your discussion. And they ask you how you’re dealing with is. This is the time when like magic you change gears and carefully express some personal story or endearment to convey that you are acutely aware this is your life, you are human and yet don’t begin to go all Shakespeare on how the blackest night has no comparison to the despair the dawn doth bring (or some such). In other words, keep it in check.

4. Be able to swing back out of the emotional vortex, which doctors don't actually like to see, and come back to some middle ground in hopes that when they’re outlining their action plan (or lack of one), they will do so remembering they are fighting for a human—for you—and leave with a likability so maybe they will continue to fight. Humor, slight jokes, are a really good insertion here, partly because it is often the hardest time in the appointment, as the arch of hope is often over and your fifteen minutes (or forty-five), of pleading your case is up.

5. Always end with a sincere thank you and smile, even if you really want to scream loudly and swear vehemently. No matter what you're actually feeling, you have to end with a smile. It’s the rule. You may or may not ever see the specialist again, but their report will now be compiled into the file, and you never know where your path may lead. No matter what, you must maintain bridges to the past and keep on moving forward.

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Looking for a Blessing

The Pain Companion

The Pain Companion