A Letter to Patients with Chronic Disease
It is frustrating to have medical providers not understand my chronic conditions, not know how they interact with other problems, and not grasp the gravity of certain things happening to me that might be No Big Deal for patients without my particular problem list.That said, I'm inclined to be lenient. Maybe it's my background as a nurse influencing things, but I don't expect people to be constant walking encyclopedias of information about every possible condition. My doctors do pretty well with common conditions like arthritis and fibro and asthma, but when it comes to things like EDS? When I first walk in, a small minority have ever even heard of the disease, let alone treated one or more patients with it. I sigh a little, then start politely educating them about the condition, offering places online they can find out more, etc. Generally by the 2nd or 3rd visit, they've got a decent handle on things, at least in theory - generally takes a bit longer for it to really gel in practice, as they treat me and see the way EDS affects my life.
I've seen a bunch of negative comments on Tumblr and on the original article about, "Oh, they just want us to stroke doctors' egos!" but I really don't think that's it. I think the major point being made wasn't that doctors need special treatment, their egos stroked, or us to be quiet little patients that do as we're told, but more that doctors are people too. Ditto nurses, techs, etc.
People are scared of the unknown, particularly when the unknown could result in them unintentionally hurting someone else. People don't like to be reminded of how fallible they are, of how much they DON'T know. And people especially don't want to be confronted with how much they don't know in an angry, rude, or confrontational way.
Now, if I see a doctor multiple times, and that doctor doesn't make any attempt to learn about my conditions, or makes assumptions based on incomplete information and as a result makes bad decisions regarding my care, I am not going to keep quiet. That indicates to me that the doctor doesn't care enough to learn more than they already know, and I don't want to be treated by someone who doesn't care enough to learn. But the first visit or two? I give them some leeway, because they don't know me, they may never have seen someone with my condition before, and hey, maybe they will listen and then go get more information. If not, well, someone else can have them.
