I have written about dealing with careless, ignorant, detached, and outright bad doctors, which is needful and — given the many problematic layers of living with chronic, intransigent pain — appropriate. However, I’m also a nurse, and I really do see things from both sides.
You’re both right.
Having said that, I normally have to pull for the patients, because only one person in that exam room is definitely NOT paid to be there and is NOT on duty, and it’s the one seeking care.
Patients need more advocacy, partly because few of us have the vocabulary to make our real needs and issues understood, and partly because the mere label “patient” instantly drops a person out of the realm of “real human being” in the minds of providers. If you’ve ever seen, or been, a doctor or nurse who needs medical or surgical care, you know darn well how your erstwhile colleagues speak to you differently from how they did before — but still more humanely than they do to most other “patients.”
Being labeled a “patient” is damning. You become a thing, a self-steering talking object, with only a surface resemblance to “real” people. Your main appearance in the eyes of the system, and, at some level, of those who work in it, is as a collection of problems. Your main purpose is to respond to treatment and go away cured.
Chronic intractable pain syndromes become zero-sum games from this standpoint, because pain is inherently demanding — even thinking about pain is painful!*1 — and managing these disease states rarely involves being able to “go away cured.” So, from this institutionalized standpoint, chronic pain patients are set up as failures from the start, because we can’t do our job — go away cured.
Explains a lot, doesn’t it! This unfortunate fact is simply one more thing to work around.
Those of us with intransigent pain syndromes are lucky in one respect — we have interesting sets of problems, and intelligent doctors find that intriguing! Appealing to their curiosity is often more effective than appealing to their humanity, because it gets them where they work best.
A nurse who’s a patient
It has taken many years of painfully humiliating introspection for me to come to terms with this basic dehumanization of patienthood. I was a good, solid, compassionate nurse, but I did not treat people who came under my care the way I would have treated my friends or relatives if they were in my care.
Many reasons for that. For one thing, the profit-driven scheduling doesn’t allow time for anything more than slinging meds and essential care; spending too much time with one patient means putting other patients at risk.
Beyond that, there’s a primal survival reflex involved, because there are things nurses have to do for patients that would be unbearable to do to a friend or relative.
We have to do all of them, thoroughly and without flinching, because they need doing in order for that patient to heal; and we still must be able to come back to work the next day. So, we create a little distance that we can do the work from.
Patients are Other. When they become too human, they can quickly become embarrassing, and every human on earth cringes away from what’s embarrassing. (Just as every human on earth cringes away from what’s painful, and this explains why we tend to get abandoned by our friends and by the system when our pain becomes too obvious for them to bear. That, in turn, is why we get so crazy-good at minimizing the appearance of being in pain; we don’t like the abandonment, and we don’t want to hurt those around us anyway.)
Speaking as a patient and long-term survivor, starting from the underdog position is a terrible position to negotiate your ongoing survival from.
So, I spend most of my time advocating for and educating my fellow patients. They’re the ones who need it most.
However, once in awhile, something hits me, and I feel a point needs to be made.
Doctors (and other care providers)
This article is a good little anecdote from the ER, my old base:
And that, right there, is the juggling-act providers have to do. The decent ones, which is most of them (really), put their hearts on the line every day, knowing they’re imperfect and doing their best anyway.
When I was doing something intense, like dressing a complex wound or teaching someone about their disease or (obviously) coding someone, that patient was the most important person in my life. I threw everything I had, with all the control and skill I had, into the moment-by-moment demands of their care, the whole time that they needed me.
That patient was my life.
Then, whether they lived or died, I had to arrange what happened next, clean up the mess, and leave the bedside, only to go to the bedside of someone who needed me perhaps just as badly in a wholly different way.
No matter what had just happened, after all that effort and dedication, I had to leave it behind and be ready and focused to correctly identify and move forward with the next patient’s tasks.
So, yes, I rarely came off as a fluffy cuddle-bear (which I tend to do at home), and a lot of my responses could be pretty formulaic, but when the chips were down, “he [still] wasn’t my child.” He, or she, or they, was my whole world.
Being able to turn away from that intensity is what makes it possible to turn back to it at need. That’s a tough thing to deal with when you’re on the wrong end of it, when you’re not the one dying on the table or getting your insides pulled about. You know you matter, and want to be treated as if you do. That’s right and proper. It might be too much to ask of a full-time RN. (There is definitely something weird about that.)
Nurses are the bedside providers. Physicians are the directors of care, deciding who goes where and why. They’re accustomed to deciding what happens, and expecting others to make it so, so that the patient can get better and go home.
Chronic care is always a long game, sometimes a waiting game, and doctors are dealing with people who simply can’t do what the doctor’s expensive education said was the doctor’s job: “send them away cured.” This means that the chronic care provider is also set up as a failure from the start, as some have found the grace and integrity to express. *2
This must be a special kind of tricky to learn to deal with, so it doesn’t surprise me that not many otherwise good-hearted people, who go into medicine for laudable reasons, don’t always manage it with the tact and decency that chronic patients (rightly) expect.
In that case, it’s not a bad idea to find a way to waft this article their way… It’s not judgmental, and it provides much food for thought, for physicians and patients alike:
As a side-note, one strategy I find useful for getting through the thing-ness of being a collection of probl– er, a patient, is being as pleasant and amusing as possible. This creates a safe-zone of humor while drawing the provider in past the boundary of “thing-ness” I’m reflexively put in. The wry, black-nailed, hangman’s humor of living with something so vile and refusing to let it win, coming out in my burbling and whimsical-sounding tones, is probably sufficiently unexpected to blow categories out for the moment anyway.
If I can make them laugh with me (while checking me out with a puzzled “are you serious?” kind of glance) I’m halfway to being human in their eyes, and still being treatable. Then, I just keep up with my due diligence (timelines of care, understanding my treatment options, studying up on things we’ve discussed, etc.) and — with the exception of one doctor out of two dozen, who I thought was a buffoon in any case — my relationships with my doctors have been remarkably good.
*1: A write-up of one of many studies about feeling others’ pain:
And a scientific article looking at brain response:
*2: A particularly dazzling piece from a UK doctor on coming to terms with treating (and living with) chronic pain patients: