You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
He ends with a list of strategies for interacting with doctors - especially new doctors, because as all patients with chronic diseases know, the more complicated your illness gets, the more doctors get involved - for better or worse, that's how medicine works in most of the United States right now.
I find it fascinating that it's perhaps better to give patients instructions for how to deal with doctors when talking about their illness than it is to give doctors. After reading this, I was trying to imagine what the strategies are that could be given to doctors about how to interact with patients with chronic diseases. Since we're currently learning about cardiology, pulmonology (lungs), and renal (kidneys) - three areas of medicine replete with chronic illness - it seems especially relevant.
Here's what I've come up with so far (modeled after Dr. Rob's list) - please feel free to add suggestions!
1. don't come on too strong. while doctors are used to being in control, patients are used to talking about their own body like it's THEIR body - not so much yours.
2. maybe try not to refer to a million other doctors - take as much responsibility over your patients (who, after all, are your patients) as you can, instead of just their kidneys.
3. forgive them. you don't know how many times they've been asked that question before or what it brings up for them in their history, or how much it scares them. try to understand, but if it doesn't seem possible, try to forgive any strong reactions you can, knowing there are reasons you just might not know yet.
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"Love is the answer at least for most of the questions in my heart, like
Why are we here? And where do we go? And how come it's so hard?"
-Jack Johnson, in his song Better Together
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