“A Letter to Patients With Chronic Disease”
I seem to be on a medical roll lately. Another from Tumblr earlier, which I thought was relevant here:
This is a great article. Take a read if you’ve lost hope in doctors and it may give you a new perspective. I was researching and looking for doctors who actually have chronic illnesses but came across this.
[fibrofrog:] Thanks for posting this. I feel like I’ve had to learn many of these things on my own after putting up with countless upsetting doctors visits (like learning how to not come off too strong, establish a long term relasionship, and to only bring up a few problems at a time etc), so I think this article would be especially helpful to anyone that’s been newly diagnosed. A small part of me does still wish that I didn’t have to tip toe around my doctors feelings though, because whenever I come off as too knowledgable or as someone with too many questions then all of my problems are entirely dismissed and I end up leaving with no treatment
[nihlaeth:] I appreciate the honesty, he sounds like a decent doctor. But seriously, you scare doctors so you should forgive them?? I should come over less strong??? I’m not there to stroke someones fucking ego, I’m there because I have serious medical issues and they’re payed a lot to help me with that. Fear is no excuse. Human beings should treat each other decently, that goes both ways. Being a doctor does not entitle you to special treatment. And it certainly does not give you the right to treat me like less of a person. I’m sure this advice goes for the kind of doctor who wants to help but has communication issues (want a diagnosis for that?), but the majority of docs I’ve met are right-out assholes who only think about getting me out of their offices as fast as possible, often refusing to even medically examine me. I’ve been told Ehlers Danlos Syndrome is a “womens infirmity”, that I was making it up, that it was all just stress and that I should stop reading up on the internet because it was making me sick. I’ve been called crazy more times than I can count, even though everyone with the tiniest bit of interest or decency would have at least tried to confirm or dispel my story (which is actually very easy, do you want me to show you my dislocated shoulders? Just pick a joint and I’ll show it to you). If you want me to not avoid doctors, doctors should start trying to help me instead of driving me to suicide for a change.
[me] I’m sure the author meant well, but this article made me very angry with all the apologism for disrespectful behavior. In reality, yes, we do have to try to work around some harmful God complexes in order to get a bare minimum of appropriate care. Maybe from his perspective, it’s reasonable to expect this ego coddling to continue, but where’s the incentive for some of these medical professionals to act like responsible adults and, you know, not dismiss and abuse patients out of frustration and narcissism? It’s understandable that kicking people while they’re down is too common a pattern, and we should try not to make doctors want to kick us more? Depressing.
It disturbs me even more, in a way, that he probably does mean well from his own perspective, and still comes out with a bunch of not-so-subtle victim blaming. Patients get treated disrespectfully, sometimes in ways that really do harm or kill us, but we need to stop provoking it. (No matter that we still often get brushed off and told it’s “all in our head” when we do try the asskissing. And that some of us are really bad at showing the expected deference, even when we don’t have brains scrambled by being sick enough or in enough pain to need medical help in the first place.) The power dynamics couldn’t stand some change, we just need to get used to the system as it is and suck it up.
I am also bothered by the whole “doctors as a group” vs. “patients as a group” assumed dynamic here. That leads to a lot of problems, as it is, and in this case some of it borders on the old “why you hate men/white people/etc. so much?!” way to deflect real criticisms.
Interesting juxtapositions here:
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we…
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Because there’s never any good reason that anyone would avoid doctors, right? Poor doctors, getting all frustrated at having to do some problem-solving, and not getting treated with the expected deference all the time. Hint: I don’t think that’s the way most lack of respect shown flows, with the hierarchical setup here. Treat most people with respect, and they’ll respond in kind. If you’re not using “respect” as code for “sometimes harmful deference to authority figures”. I’ve been viewed as not showing that brand of respect by saying “I can’t take Medication X, because bad reaction in past”. Seriously.
Also, this apologetic “sure, thre are some jerks, but you can easily avoid them” totally ignores a major reason I am currently avoiding doctors: some of us are in managed care setups (or totally without insurance coverage), where we cannot easily change doctors if we’re treated badly. We also have to take whatever specialists we’re referred to—assuming we can get a referral at all—and do not always even have a right to second opinions without going private. (This HMO on steroids setup does very little to encourage decent behavior toward patients under the NHS, in my experience, but that’s another story.)
Some of us mostly have to take whatever we get. Sometimes that does more harm than good. Then we get bitched at when we do have to seek medical help again, because by that time we’re in really bad shape and, erm, really need help rather than browbeating and gaslighting as a substitute for actual medical care. Also, just because someone is unable to seek medical care, sometimes for a prolonged period of time, that does not mean that they are experiencing no significant problems, nor that they are showing no concern or responsibility for their own wellbeing.
Then there’s 7. Forgive us. Yep. If you, as an individual, treat me with respect and are honestly sorry about screwing up, that’s reasonable. As a group, with no signs of desire to fix any of the systemic problems, not so much. I could go on, but this is more than long enough already.
Talk about entitlement and lack of real understanding of the experiences of people dealing with chronic health conditions. The doctorsplaining kinda adds insult to injury, pretty literally in this case.
Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know – there is only one thing worse than trying to get an out of hours doctor to see you and that’s having to do it on a bank holiday.
We wait until we can’t walk, talk or eat before we’ll go near a hospital bed. We spend weeks longer than we should convincing ourselves we’re really fine. In fact, convincing ourselves that it’s “all in our heads”
You find yourself justifying things with friends that you don’t need to explain. You doubt yourself – did you cry off your sister’s birthday because you were heaving over the sink, or did you somehow make it happen because you didn’t really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?
It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it’s “all in your head”…
“Don’t ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don’t ever blame a patient if you can’t find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.
And with that, he wafts off in a cloud of quiet importance.
Doubting your patients, judging them, labelling them, is dangerous. But most of all it’s cruel. It leaves scars deeper than any surgeon. Yet I’ve met precisely four people to talk to so far this stay and it was ALL “all in their heads.” Unlikely, isn’t it.
As an aside, I didn’t even mention the (IIRC) third item in the “letter to patients” thing, about not using the ER unless it’s absolutely necessary. (And that you should reasonably expect lousy treatment if you do need to go through the ER with a chronic condition. That is basically what he is saying.) But, yeah, I don’t actually know anybody who does that; more the “we all wait until our head has actually fallen off” pattern Sue mentions in that excellent post. And it strikes me as even nastier to add that extra doubt as to whether you really need to be going and bothering them when your head has fallen off.
I do know some uninsured people in the US who mostly have access to medical care through the ER*, with all the complaints about their tying it up with minor complaints and letting health problems get serious before they seek treatment (make up your minds, please). Also, IME, people in that situation will hold off until they’re afraid of dying or, say, losing the use of a limb before they rack up that kind of bill. But, totally different issue.
* I barely avoided it when I was back in the US, uninsured. In 2008, I had a hell of a time finding a doctor who would even see uninsured patients at all, even with the usual pay before they’ll even see you arrangement. (Luckily, we could afford office visits.) One of the hospice nurses got concerned enough by what she saw of my health situation, with what was in retrospect at least one vertebral fracture from hefting my mom around, and a bad chest infection–I wasn’t even saying anything about it, just looking in bad pain and sounding disturbingly croupy–that she called around on her own time, and found one GP two towns over who was willing to take me on as a patient. That ended up being pretty bad care, but yeah, at least he gave me some antibiotics and diabetes treatment. If that nurse hadn’t been such a caring person, I probably wouldn’t have even gotten that help. I knew better than to try to go into the ER and expect decent treatment for back pain, and I didn’t want to rack up ER-level bills over croupiness that didn’t look fatal.
I’d been uninsured before, while poor, and the situation wasn’t that bad then. Figuring out how you were going to pay for it was the big problem, not getting in the door in the first place. I feel for people in that situation now.