read this letter

[kaigou]

If you suffer from any kind of a chronic condition -- and I do think many of the mental disabilities/illnesses could fall into this category -- you should read this letter to patients with chronic disease, from a Dr. Rob. A short bit from it, to give you an idea of why I think it's particularly valuable reading (and something not often said or admitted by doctors):

...chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

(h/t to readerofasaph)

Comments

[dejla]

Thank you for this!

[kaigou]

You're welcome!

[branchandroot]

That actually sent me into brief frothing fits. It's nice that he admits those things, but his stated solution to it is still for the victim to do all the work to get around the abuser's problem.

[kaigou]

I think the only alleviation in there is that he does at least validate that if a doctor doesn't do it, you find someone who does. I just can't accept that all potentially destructive behavior is automatically also malicious; I think he does a good job of pointing out that sometimes a doctor's too-brusque or dismissive action is due to the doctor's own issues and not that the patient is not worthwhile or is making it up. There is nothing a patient can do about that doctor's attitude, but I don't think that means I have to accept the abusive behavior, only that in a working relationship, I must be willing to make a few adjustments at first and then, if the doctor doesn't come forth with his/her half, then I am perfectly right in moving along and finding someone else. Refusing to allow a patient that option is where, I think, the real abuse occurs.

[ajnabi]

i agree. i fucking HATE this letter. it makes me so, so, so, so angry.
i am so tired of being told how to deal with doctors and understand their limits and realize they're human beings too (and i have heard this crap about seventy nine billion times by now). when are they going to realize, um, that *i'm* a human being and don't deserve to be tossed about like some kind of punching bag?!

(um. i hope the commiserating is okay?)

[branchandroot]

*grins* Totally okay. Yeah, I'm not inclined to give a lot of sympathy when the doctor is the one with the power in the relationship (and therefore the greater responsibility); that's what ticked me off so much about his comment, further down, about how he refrains from yelling at his kid because it's counterproductive, just like patients shouldn't yell at doctors. Not a valid analogy!

Being a doctor is hard, yes; it's draining, yes; they need to safeguard themselves just like anyone else in a caregiving profession. They need to, not me.

[kaigou]

I guess I would have to say that when I've dealt with doctors and walked in with an attitude like the anger you express here... it's been nothing but a failure.

Yes, I understand demanding that a doctor give us a fair shake and that after enough rounds of doctors who don't return that respect, that one has the right to be angry. But I also think that it's wise to remember that the doctor deserves the same in return, when you're both brand-new to each other. That's really where this advice is most important: when you're meeting a new doctor for the first time, because I think a lot of us who've dealt long-term with conditions do forget that doctors aren't always as expert in our specific conditions (let alone our specific cases) as we ourselves may be.

Once the doctor's proven himself a complete jerk with no respect for you as a human being, then certainly, react however you like and with all the anger you find appropriate. But to walk in with a chip on your shoulder doesn't just make it harder on you and the doctor to build any kind of healthy working relationship -- it also makes it a lot harder on all the rest of us who come along behind who are struggling to meet the doctor halfway without any chips on our shoulder.

[thistleburr]

Glad I wasn't the only one who was frustrated by this letter.

[leorising]

I read it, then posted a link in the LJ fibromyalgia comm right away. I think what he says is valuable, even though I don't really like it. (Frankly, I'm tired of babying doctors' egos, but I've got some good ones now, so it's less of an issue.) It'll be interesting to see what kind of discussion happens in the comm.

Thanks for this.

[kaigou]

Maybe I read it wrong, but I got the impression that the most important chunk there in the middle -- about meeting a new doctor -- is to keep in mind that if you want to be respected, be willing to do the same in return. There's nothing in there, that I saw, that says you can't then tell a doctor where the hell to get off if he doesn't pay you the same basic respect you're trying to give him... but if you can't even give the doctor that basic respect in the first place, how are the two of you going to have anything resembling a decent working relationship in dealing with healing you?

I didn't see anything that really asked for babying doctors' egos, though I suppose some might be furious because no one likes being called on the oppression olympics, and I think the letter veers towards that: seeing how it does contain a reminder that other people -- who are not us and who are not suffering a painful or difficult chronic condition -- also have feelings and can hurt and ache in their own way, too. It doesn't make them a baby any more than it makes me a baby to struggle through depression or chronic arthritis or whatever. Their willingness to acknowledge (and to spend their career trying to treat and heal) our issues does not change the fact that they have tough days, too; I do not accept that it would diminish me to simply acknowledge that someone else may suffer what is hardship to them. Or more bluntly, I do believe that when we play the oppression olympics, no one wins.

What I did see was a polite attempt to explain why sometimes we with chronic situations get the reaction we do from doctors -- and also, I saw validation that if a doctor does prove himself a jerk, that it's entirely appropriate to find someone new. That part, I particularly liked, because too many doctors seem to insist that you stay with them, like they can't handle rejection when you tell them it's not working.

I suppose in some senses, I look at working with doctors sort of like dating. Plenty of people are assholes, and if you're human then you've probably dated your fair share, but if you meet someone new and immediately say, "look, I've dated X number of guys and they've all been jerks, so I can tell you right now that I already know you're a jerk, too, even though we've hardly even been introduced" -- well, I wouldn't be surprised if the new guy promptly acts like a jerk by dissing you and walking away. Quite frankly, no one likes -- and I just don't believe anyone deserves apropos of nothing -- to be treated with complete disrespect and railroading from the get-go.

If the guy proves himself a jerk despite that basic human respect, certainly, dump him, but did you really get those good doctors you've got now by walking in the door and insulting them right off the bat? I would 'spect not, any more than I got the good guy I'm with now by starting off our friendship with me constantly suspecting him as only minutes away from being as cruel as my previous guy.

It appears, however, that my opinion is widely unpopular. Not that this ever stopped me from having an opinion, of course. Just making the rather saddened observation.

[elanivalae.livejournal.com]

I think part of the problem is how these things usually end up feeling more like an audition or a job interview than like just giving respect to get respect, because the relationship is so incredibly uneven to begin with -- particularly for people who have serious physical pain issues. I understand giving respect to get respect, and I agree with you that it's important to go in initially with the attitude that that may at least be possible. It's not that that bothers me (or most of the other people with chronic illnesses who I've discussed this with.) It's the feeling of having to continually prove yourself before you can even begin to achieve basic care, let alone the higher standard of care that might actually help. And if the problem you're going in for is already sapping so much of your energy you can barely function (which is, after all, why you're seeking help in the first place), being told that the solution to this is for you to expend even more effort is a tough pill to swallow.

That and his letter pretty much ignores the reality of health-care for a lot of people in this country -- that you often don't have much, if any, choice in who you have to work with, and things like scheduling lots of little visits to discuss only one or two things may not be financially feasible, not just for insurance reasons, but also because every one of those visits means taking more time off work. I understand that that's not the point of the post, but it's frustrating the lack of understanding a lot of doctors have about this. :/

I think he has good intentions, though. And seeing a doctor actually admit that the patient might know more about her own body's functioning than the doctor does makes me want to weep with joy. I think this is really key -- I've only ever encountered two doctors who expressed this sentiment to me, and they were also the only two good relationships I've ever had with doctors.

[kaigou]

I think part of the problem is how these things usually end up feeling more like an audition or a job interview than like just giving respect to get respect, because the relationship is so incredibly uneven to begin with -- particularly for people who have serious physical pain issues.

Believe me, it's no better when every other doctor's immediate suspicion is that you're talking about ADD simply because you're really a drug addict and need a new fix. Or that it's just all in your head, and y'know, you are female, and then they look at you like your chattering is just a sign you're very immature. I don't actually think there's any condition -- mental or physical -- where it's not incredibly difficult, and painful (on several levels) to have to go through that new-to-each-other first meeting. Not to mention the exhaustion of it, and the sense of oh, man, not this again.

However, when I do find a doctor willing to expend as much effort on my behalf as I'm expending to try and communicate what I need... for me, at least, that makes it worth it. And seeing how I have been lucky to have even just three or four doctors (out of possibly like thirty, but hey, still better than nothing) who recognized my efforts and then went the extra distance and then some... I guess I'd have to say when that happens, it really does make up for a lot of the hassle and hell. It makes me feel like I'm not in this alone, and I've got someone willing to do what he/she can to do more than just meet me halfway.

The only doctors I've ever met who truly need their egos babied are surgeons, and after having to work with a number of surgeons as a consultant (and not a patient), I am willing to do anything (short of letting a limb simply drop off from atrophy) to never EVER have to deal with a surgeon again. I'm willing to give someone a fair bit of respect just for their learning (at least until they prove they deserve otherwise), but I'm not willing to get down on my knees and kiss the ground someone walks on just because he's a freaking surgeon. I have a slight bit of an attitude problem when it comes to god complexes. Just enough that I feel the sudden urge to punch someone.

All the good doctors I've known have been willing to freely acknowledge that I have a much better sense of what's going on in my brain -- and the ins and outs of my condition's chemistry -- than most of their patients and even than them, sometimes. They were willing to let it become a mutual learning experience, which in turn enhanced the mutual healing-slash-problem-solving working relationship. The problem is that when I had to move states for job or school, they wouldn't come with me. Damn it!

[leorising]

Yeah, not sure what I said to elicit such a vehement response to my comment, but I don't disagree with you at all. Dealing with a new doc is a lot like dating, that's a great analogy.

Just so you know, I'm not generally aggressive or off-putting to my docs. The last two PCP's I've had an intake with (I had to do a geographic switch,) though, told me very bluntly first thing out of the box that I had to limit my answers to "yes/no" because they were limited to 15 minutes for the intake. One doc I cooperated with, then fired. The other one was more put-upon than arrogant, I cooperated (again) and we ended up with a very good visit. I'm keeping her, and anticipate a very constructive relationship. I wasn't mean or aggressive to either of these docs, but neither did I feel like they saw me as anything but an unwanted, complicated "case". I can not like it and still do it, do you see?

[ETA: When I receive copies of my medical files, I usually see myself described as "a pleasant and well-informed patient." Just FYI.]

"I didn't see anything that really asked for babying doctors' egos..."

In fact, Dr. Rob clarifies in the comments section that yes, he was suggesting we baby the doctor's ego at first: "The entire point of this post, however, was that the chronically sick patient sees the worst side of doctors and that in and of itself gets in the way with their care. If you find someone you find MIGHT be a good doc, then approach him/her gently and patiently. Building a therapeutic relationship is your best chance to get good care." As you said, to approach it much like a first date. It's reasonable, and I get it.

He also clarified directly to my comment: "I am not defending the human foibles and frailty of doctors, I am just talking about it. You shouldn't have to coddle doctors' egos, but they are what they are. Much of the frustration about doctors stems from the fact that they act like people but don't want others to know...The last think [sic] I want to do, however, is to make it seem like docs have it bad. No, I am just talking about the psychology of doctors and how you can deal with it for your own advantage."

I hope that clarifies things a little. I must be tireder than I thought, if I sounded so aggressive to you without meaning to. My apologies.

[kaigou]

Actually, you were possibly the least aggressive of the first-round of replies, which is why I replied at length. It felt safer to address you, is all. Okay, that, and I get the sense we're of an age, too, so I don't feel quite so much like snarking that if after thirty years of changing doctors roughly every two years due to moving or insurance (getting or losing or changing) -- even when it's been a doctor I've really not wanted to lose -- and then having to go through the entire song and dance all over again through no fault of anyone's, that maybe I've learned the writer of that letter is speaking some truths.

I guess you could say I've had a lot of blind dates. (Heh.) Maybe that's made me more weary, enough to tone down my cynicism and accept that sometimes I do gotta acknowledge the person facilitating the healing is just as human as I am. I mean, if the post hadn't spoken so much to me, personally, as reminder not to do or to try to refrain from doing things I know I do -- like steamroller and overwhelm unsuspecting doctors -- I never would've linked to it.

[dragonhand]

I feel better knowing that at least a few doctors out there may acknowledge my own understanding of my own condition. This is good news. I'm willing to be wonderfully patient and polite with a new doctor to get to a point where she can be helpful, or at least to the point where he really listens to what I have to offer and learns from it. That would be so awesome.