The comments are far more fascinating than the article.

Yeah, the comments were like an army of chronic disease people ascending to that post. Ay-ay-ay. I wanted to make one as well, but never reached the bottom of the comment flow.

Asking patients to "give a shit about ME, respect ME" is something doctors should wipe away from their brains. Especially ones treating chronic type conditions. it's like a mechanic wanting to talk to you about HIS car, except a million times worse.

What fleacircus said a billion times. GRAR!

The comments about doing research about our disease(s) and having doctors dismiss that are dead on. They tell us we need to be our own advocates and educate ourselves and then they dismiss what we've researched and learned. WTF?

flea and deborah: My parents are both GP's and I know they are people who care about their patients and who want to help. I presume you don't mean to lump all doctors together, and I know that there are plenty of terrible, in any number of ways, doctors out there, but I feel hurt on their behalf that you would go to see a doctor and think of them as a machine servicing your needs, and not initially worthy of your respect.

In fact you shouldn't ask a service of ANYONE and think of them that way. Until someone proves themselves unworthy you should treat everyone with, at the very least, guarded respect

I have doctors among my family and friends too. I'm not sure what you're saying... that I should be nice to my mechanic? I think there's a misunderstanding.

Lol, we probably are misunderstanding.

I don't expect, nor have any right to expect, you to be 'nice' to your mechanic, but I do hope you treat him/her with respect.

I treat my docs with respect, I mean I'm not rude or anything. It's all "hi Doc" "Hi patient, what seems to be the trouble?" "Well, backstory Doc, I have this chronic disease, and I am here because X Y Z is acting up and to check if perhaps [x drug regime] would be a good idea at this point" doctor instantly hisses and sends me on my way without any meds and I will have o try again in a few months.

I don't go to GP's. I mean If I am at a GP for anything else, I will mention [chronic disease] but I'll also say "That is probably not related to [random flu I have right now], it's just so you know". I head straight to the specialists when I have trouble with [chronic disease].

Hm, I do think there's been some misunderstanding. Even with a car, where problems have definitive fixes (given enough money) you're going to get the best service if you pick a trustworthy mechanic, stick with them, and develop a good working relationship with the person, whether that be being 'nice' or respectful.
It goes without saying that a respectful interaction needs to go both ways, and the article simply makes that point.

thanks for posting this Nucleo, I sent it to my mom.

It goes without saying that a respectful interaction needs to go both ways, and the article simply makes that point.

But it does so by ignoring the power imbalance inherent in a doctor/patient relationship, especially in a doctor/actively-sick-or-hurting patient relationship. Doctors need to be factoring in that patients may be in pain, suffering cognitive deficits as a result of their conditions, lacking sleep due to chronic pain, experiencing daily and unending prejudice and stupidity from other people (including medical personnel) who don't understand or want to acknowledge their condition, unable to access resources the doctor thinks they should have, etc. etc. etc. Doctors may be (and probably are) overworked, underrespected, and severely time-limited, but that's not the same level of obstacles that a lot of people with chronic pain or illnesses are facing.

I know there's a bit of a trend to try to democratize the doctor/patient relationship, but that requires that doctors, because of the inherent power imbalance, ramp up the respect they show their patients so that doctor and patient can work together as a team. Then there's the older model, in which there's almost a noblesse oblige sense that doctors need to treat their patients with dignity and respect; I think that can work, too.

What can't work is doctors completely ignoring the fact that they're the ones wearing the white coat (though sometimes that's just metaphorically) and thinking that they get to be rude and dismissive of someone who's coming to them for help. That's not how healing works. And it's the *doctor's* job to make sure the environment in which he or she is practicing is healing and productive, not the patient's.

Of *course* it's easier to work with patients who want to work with you, and for patients who are willing to make that effort, great. But it's not the patient's job to make his or her illness and symptoms palatable to the doctor.

What can't work is doctors completely ignoring the fact that they're the ones wearing the white coat (though sometimes that's just metaphorically) and thinking that they get to be rude and dismissive of someone who's coming to them for help.

This is a straw man. Nowhere in the posted article is the above assertion made.
In any case, of course doctors should be treating their patients respectfully, even if said patients are not behaving at their best. It's not the least bit controversial to say that all doctors should strive towards that ideal, and the vast majority do try. Indeed, the current medical school curriculum across many U.S. programs contain specific training on working with challenging patients, disadvantaged patients, and patients with chronic diseases, reflecting the profession's goals of inculcating these traits in trainees.

That said, a major point of the article is that doctors are human, and sometimes may not quite reach that ideal. It's all well and good to say that they should, but as a practical matter for getting good medical care today, the patient meeting the doctor part-way leads to better results.

His first point is:

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

He tries to soften this by saying that patients should get away from doctors who are too rude, but that's not always easy (due to geography, insurance, lack of resources, etc.). He's coming at this from a ridiculously privileged position, not acknowledging that privilege, and acting like he's doing everyone a favor by telling less-privileged people a bunch of shit they already know as if it's a huge revelation.

I don't even *have* a disability or chronic illness, and yet I'm fully aware that many (most?) people who do often have to mollycoddle their doctors, even though the relationship is supposed to work the other way, that people with disabilities and chronic illnesses have to deal with a boatload of shit from the medical industry that other people don't have to face. And this article reproduces the exact same dynamic that other in-groups use to try to cudgel out-group members into "behaving appropriately" so that the in-group doesn't have to feel so guilty and uncomfortable around the out-group.

The thing is, out-group members don't *need* that advice; their survival depends on figuring out how to appease the in-group on a daily, continual, neverending basis, and so out-group members are way the hell more skillful at it than in-group members even realize most of the time. Which means, when out-group members aren't asskissing in-group members, it's probably not because they're not aware that asskissing is a productive technique, but instead because they don't have enough spoons (because, for instance, chronic pain patients might be in pain) to put on the mask and pretend.

The entire piece is a giant Watch your tone argument, with all the unacknowledged privilege and power that implies.

I've been on the provider side of the relationship. It's a fucking pain in the ass when clients with anxiety flake out and skip appointments and don't return my calls and get too wound up to have productive therapy sessions, for example. But if they weren't having those problems, they wouldn't need my help, and I'd be a crappy therapist for agreeing to treat them for anxiety and then getting upset with them for showing symptoms of anxiety.

Yes, doctors are human. But these sorts of letters should be addressed to the doctors who are screwing up (as we all do; I'm not saying they should never screw up), rather than shifting the responsibility for the doctors' frustration and anger back onto the patient's tone.

...aaaand then there's my mom who has spent her entire life, even before she was disabled, just generally assuming that the world at large owes her favors and just in general being a spoiled, entitled, immature pain in the ass. Add rheumatoid arthritis and all its issues in there and despite all our efforts to be patient and kind and understanding, it's like mom has just become defined by her disease and how much she can work it to her advantage. I'm sorry if that sounds really harsh but believe me, you have not met my mother.

And the shitty thing is, she's the kind of patient who potentially makes life miserable for other RA patients by constantly being such a demanding, rude asshole to her care providers. I hate to say it but I and the rest of the family have just taken to keeping her at arms length because dealing with her negativity is quite simply, exhausting.

*shrug*

I'd love it if she could even KEEP a doctor for any length of time.

I think most of the article falls under the idea that "You catch more flies with honey." Pretty obviously true in general. But—these people are all out of honey. And if anyone should understand that, it's their doctors. So while the article is right and true, it's also kind of wrong, and since it's coming from someone who should know better, it seems kind of offensive.

If a chronic pain patient is rude to their mechanic, then I don't expect the mechanic to be perfectly understanding. I'd wish it but I don't expect it. Maybe the person gets overcharged, or their car gets bumped to the back of the order, or whatever. That's just the way life works; it sucks to be a person with a "stealth" disability and you can only expect so much slack from the world. But the person's doctor isn't supposed to be a part of that. The mechanic can say, "fine, you've got X, but that's no excuse not to be an asshole, grumble grumble", or simply not enquire/care, and then act on that. The doctor can say that too (and boy do they ever vent), but they don't get to act on that. I wish and expect the doctor to do the right thing. And if they can't, well maybe they should have picked radiology.

So yes, it's a general dream that doctors should be understanding. But it's also a dream that people should be polite and respectful to everyone. To me it seems wrong to let the first one slide and push firmly on the second one. I think the obligation of the doctor towers over everything else in this equation, and the "yes yes I understand it's difficult but you are obligated to do your best" should be directed at the person who's job it is to do exactly that, who is well-compensated for it, who volunteered to carry that moral weight, who can go on vacations and not problems home with them. Not the other person in the room.

I think the obligation of the doctor towers over everything else in this equation, and the "yes yes I understand it's difficult but you are obligated to do your best" should be directed at the person who's job it is to do exactly that, who is well-compensated for it, who volunteered to carry that moral weight, who can go on vacations and not problems home with them. Not the other person in the room.

Exactly. And well put.