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“A Letter to Patients With Chronic Disease”

April 24, 2013

I seem to be on a medical roll lately. Another from Tumblr earlier, which I thought was relevant here:

A LETTER TO PATIENTS WITH CHRONIC DISEASE ›

nihlaeth:

fibrofrog:

fibromyalgia-fairy:

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.

_____________

For a little more context here, from Sue Marsh (who has Crohn’s, of all things to psychosomatize):

IT’S ALL IN YOUR HEAD ›

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.

9 Comments leave one →
  1. April 24, 2013 9:55 pm

    “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.”

    Absolutely. I also feel suspicious of any doctor who seems to think that way. I’m unlikely to phrase this right, but the sort whose approach is “I’m a doctor, here to save the day!” as opposed to “I have this knowledge and expertise, let’s see how that might help this situation.”

    I find that younger doctors, especially but not exclusively women, are much better at this. In recent years, I’ve met several doctors who treated me as an expert in my experience; an expert in inhabiting this body consulting an expert in medicine. And that’s really great. I’ve been really lucky, myself, but even the slightest indication of doubt and impatience, at that moment when you’re at your most vulnerable, means that I too hesitate before I seek medical attention.

    I know for folks who’ve had it worse, it’s extremely difficult. I’ve known folks with chronic illnesses who move house and take three years to register with a new GP. Until a few years ago, when my chap was scared of seeing the doctor and described his fear, he would include things like “They might laugh at me.” Which I might have thought ridiculous if, as a teenage boy, he hadn’t had a doctor laugh at his pain response. He’s still very nervous, and unfortunately, I can never promise that there won’t be some doubt, some impatience, some suggestion of anti-depressants to combat a broken leg…

    • urocyon permalink*
      April 29, 2013 1:10 pm

      I’m glad that you’ve had some better experiences with younger doctors. So far, it’s been hit or miss for me, but that may be something to look for when I am finally able to look for another one.

      My husband hasn’t registered with a GP at all in the over a decade he’s been living in the UK, and has only sought any kind of medical treatment once even though he’s needed it more. (That elbow must really have been hurting…) He doesn’t have any chronic conditions he can’t manage on his own–like problems with a repeatedly dislocating shoulder from his own bendiness, which targeted strength training “fixes”–but some really bad medical experiences from ending up on a burn unit as a little kid. There are all kinds of reasons to avoid medical settings, and I can’t help but wish it were considered more common and understandable as it increasingly seems to be with dental work. And we’re back around to intent not being magic; traumatic experiences are traumatic, even if they’re “for your own good”.

  2. April 25, 2013 1:50 am

    The “only bring up a few problems at once” thing gets me. Because…what if the problems are inter-related, or seemingly disparate symptoms of the same thing? And if we’re choosing which problems to bring up to you at a time, and leave out the thing that actually would have been the clue to enable you to solve something, guess what:

    You’re just going to blame us again.

    You are the effing doctor. You were trained, supposedly, for many many years in the science of differential diagnosis. It is your actual job to use it.

    I am all for making lists and setting priorities, but making it a scared, overwhelmed, and chronically ill patient’s responsibility to not overload a doctor with information, sounds like a great way to get someone killed or disabled by a preventable complication.

    • urocyon permalink*
      April 29, 2013 12:55 pm

      Yes. I didn’t go into that very much, but very much yes. That’s also the thing about chronic illnesses: most of them effect more than one body system, because your body is a bigger system. As I’ve written before, somewhere here, it’s also more than a little scary realizing that you’re better at spotting and working with patterns than at least 90% of people working as physicians. (And that’s a generous estimate.) It’s not the patient’s fault if you’re unable or unwilling to handle the complexity that is a body.

      ETA: This also reminds me of all the excuses for misdiagnosis or total lack of proper diagnosis/”it’s all in your head” from patients presenting with “nonspecific” symptoms. Sure, it may look “nonspecific” if you can’t or won’t see it as part of a larger constellation pattern of symptoms. Even when the patient is telling you about the characteristic pattern, and you insist on viewing everything as totally isolated. /ETA

      I am all for making lists and setting priorities, but making it a scared, overwhelmed, and chronically ill patient’s responsibility to not overload a doctor with information, sounds like a great way to get someone killed or disabled by a preventable complication.

      Exactly.😦

  3. April 29, 2013 3:28 am

    The original post made me so angry, I can’t even explain why it made me so angry because there were too many wrong things and disturbing messages on that post, for me the author is just another doctor making excuses for the attitude of other doctors, I’m sure his intentions are good but in the end that doesn’t mean much since most doctors have good intentions and still harm people. The author doesn’t seem to have a solid base on reality and just uses a lot of victim blaming and poor excuses. He tries to show his empathy towards patients but fails completely in my opinion, it sounds extremely condescending.

    There are many things that are just not true in that post, while there are always exceptions I never met a person with chronic illness who believed anything the post said, especially those who have been sick for a long time or who were born with disabilities, most of us never believe medicine to be infallible or doctors to be able to fix all medical problems, it’s doctors and healthy people who believe more in that myth and who treat people with disabilities/illness badly because we prove that’s not true, doctors should know better and should respect their patients and there are no excuses for how the medical system works, lives are lost because of it and people suffer and I rarely see a professional doing something to change that.

    I have never received good care by any doctor, never got any respect and I have been gaslighted, blamed and invalidated by medical professionals constantly, I have no desire to waste my energy caring for their god complex and honestly I know people who tried to do that and were also told their illness were not true, it doesn’t work but it makes you feel worse and more defeated when trying to treat doctors as fragile narcissists.

    I never avoided doctors or medical care, it’s the doctors I go to who refuse to treat me. My problem is not that some doctors are jerks but that most of them and the medical system are full of prejudice and harm people’s live, I’m not even looking for a doctor to treat me nice, I just want a doctor with basic respect for their patients and smaller ego.

    I’m scared of doctors and different from me, they actually have power over my life, I can’t harm them in any way but I had my life harmed by people in the medical professional in ways that are obviously a serious and common problem, it’s a systemic problem and that’s what doctors should worry about, not if patients are refusing to treat them the way they want or if patients are “coming off too strong”.

    I refuse to see the fact that apparently my existence and illness are harming the illusion of their godly powers as a good excuse for the disrespect I get from the medical establishment.

    • urocyon permalink*
      April 29, 2013 12:52 pm

      Well said, with everything. I was trying pretty hard not to just start spewing angry word vomit over all the docsplaining. (I was also trained to be way overly polite sometimes, and that’s hard to get past.) The original article struck me as a little too good an example of what exactly is wrong with the system. That includes people who are perpetuating the problems that harm people getting all defensive about it and trying to convince us it’s for our own good.

      I maybe should have more explicitly said that intent isn’t magic. If anything, in cases like this, trying to convince yourself that you’re doing the right thing–while it’s actively harming people–is even worse.

      “So like, intent does matter, it’s not completely irrelevant; it’s just not magic, and does not stop harmful acts from being harmful, and once you start acting like your intent is magic your intent isn’t good anymore.” #

      Better way of putting it.

  4. April 29, 2013 2:08 pm

    that letter pissed me off too…I wrote something about how to find doctors that might not cause so much harm…I’m getting better at finding tolerable consultants…which is how I consider them now:

    Medical compliance? Adherence? No. My MDs are my PARTNERS
    http://beyondmeds.com/2012/01/30/compliance/

    I’m so sorry you’re having a hard time right now…I’m reading your new post right now…wanted to see what this one was…and yeah…that letter made me upset too…

  5. September 5, 2014 8:50 am

    Thank you for all of this. I had seen the original article when it came out, and it left me unsettled and angry – then the responses to it that I found around the web, agreeing with the author and going further, left me *furious*. It was really validating to see you writing all the things that I wanted to, but didn’t because, frankly, it’s a lost cause. But you’re definitely doing some good with a piece like this; it doesn’t change anything, but it tells us we’re not alone.

  6. February 15, 2016 7:20 pm

    Remember: the medical miles doesn’t merely tolerate attitudes and behavior that look like ‘pathological narcissism’ – it often encourages such behavior.

    Hence, one more or less *must* do what amounts to a ***malignant*** variant of ‘how to make friends and influence people’ when dealing with the medical environment. In other words: unless you get ^really^ lucky, you should presume everyone you encounter in a given medical environment has (until they demonstrate otherwise by consistently acting in your true best interest) has a cluster-b personality disorder – namely, they’re a Narc or a s’path.

    This is even more so when the bulk of society views you as ‘subhuman and defective’, i.e. you’re autistic as then you are not merely ‘an easy meal (socially speaking) -you’re also a ‘nutritious’ meal (the one preying on you gets full ‘social brownie points – maximal social profit, much as if they bagged a BAD terrorist ) but also a risk-free meal (as in they’ll get away with (figurative ) murder).

    That kind of setup will tempt any Normie who isn’t an absolute *saint*!

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