Manipulative? No. Impertinent? Maybe.

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A second post for Blogging Against Disablism Day, even if it’s late by now. (I think they said late posts were okay, and I really haven’t been up to making all the posts I intended to make yesterday.)

Years ago I lived in an apartment that had formerly been occupied by a nurse. I still got some of her nursing magazines in the mail, which I usually threw out. But one of them had a front-page article on spotting manipulative patients, and I stopped and read it.

In this article, I did not learn a whole lot about manipulation. I did learn that some healthcare professionals are systematically trained to view ordinary human behavior as attempts to manipulate them. (I think this says a lot about the egos of the healthcare professionals who come up with this stuff, personally. They think their patients’ every action is about them.) I learned in particular that the following are all, in the eyes of some people, manipulative:

  • Telling professionals they’re not giving you their medication on time.
  • Complimenting professionals.
  • Saying professionals have done or are doing something wrong, either to their faces or to other professionals. Trying to get genuine help from some professionals when being wronged by others.
  • Talking to professionals as if you’re their equals.
  • Trying to do little things outside of imposed routines to get a sense that you have some degree of autonomy.

They worded it differently, but those are the sorts of situations they were describing.

It is very little wonder then, that during my last emergency room visit, a nurse referred to me as manipulative. She later apologized. But at the time, that’s what she called me. I tried to find out what I was doing that was so manipulative, since I’m not very capable of manipulation and get really frustrated when something I’m doing is construed this way. It turned out, in this instance, that continuing to repeat that I didn’t feel well was the manipulative thing.

I’d gone in because I was breathing really shallowly and clearly headed for bad territory, I couldn’t even sit up. Everyone around me agreed I belonged in there, one doctor even talked about getting me admitted to the hospital so that I could deal with specialists instead of harried emergency room doctors. A 911 call was made. They took me to the hospital. Etc. Etc. Etc.

The doctor there was what one staff person described succinctly and immediately as a jerk. He did not treat me like a human being, he treated me like a lump of flesh that happened to be attached to some interesting numbers he wanted to change. He was annoyed by the fact that I had things to report about what was bothering me that had nothing to do with his esteemed numbers. He ordered a bunch of tests without telling me what he was doing to me, including some that were fairly invasive. He never told me the results, either. I was clearly supposed to lie there like a block of wood and not tell him much of anything about what was going on for me subjectively. His plan was to continue throwing bronchodilators at me until I either got better or they couldn’t give me any more. He made it very clear to me that all his decisions were final, that I was to obey him, and that I had “very little” (he said this with amusement) say in what happened to me.

They kept taking peak flow readings off of me. Generally, I get a much higher one right after a breathing treatment, then it goes down a bit, sometimes a lot. Generally, when I am being treated by someone who truly wishes to monitor me for my health — in fact every other time I’ve been treated for an asthma exacerbation — they wait around for awhile and make sure that I’m stable. Not this guy. He got me up to ten points above my red zone (the color-coded danger zone that you’re supposed to always see a doctor immediately about) immediately after a treatment, and declared me better and stable and ready to go home.

Well… not exactly. My lungs were definitely more opened up, and that was a good thing. But they hurt even more than they had when I’d gotten there. My oxygen level was lower than it had been when the paramedics had been called. I was still extremely lethargic. And I felt like there was a cat sitting on my chest: I was still expending a lot of effort to breathe. I could clearly breathe more air, but it was still taking a lot of effort not to breathe super-shallowly. (Which is non-trivial. One of the real problems with asthma is not just how much air a person can force themselves to pump, but how much exertion it takes to pump it, and therefore what happens to their breathing when they wear out.) And my peak flow was back in the red zone again. In other words, had I been outside of the emergency room, and called a doctor at that point, they’d have told me to go back to the emergency room.

He refused to listen to a word of this. He refused to even look at the peak flow meter showing the number in the red zone, instead preferring to report my previous numbers that were in the yellow zone as my official peak flow. He insisted that nothing I was describing could possibly be happening because my numbers were “so good”. (Ten points above red sustained for all of five minutes isn’t “so good” by just about any definition.) He seemed bothered, even, by the fact that my pulse was now so high from the bronchodilators that there was no way I could take any more of them.

After he hung up on a friend of mine who tried to explain what was happening, and stormed out of the room, my staff went to ask him about a second opinion. He said there was no such thing as a second opinion in the emergency room (untrue, I’ve gotten them there before, easily, from doctors who were less egocentric and more aware of their limitations in certain areas, as well as more aware of patients’ rights). He said that my x-rays were normal and I could go home. (I had not had any x-rays that day. My previous x-rays from the day before had shown a portion of my lung was either collapsed or infected, probably collapsed. He had told me this himself, as had the doctor I’d seen the day before, as later did my pulmonologist, who added that it was almost definitely collapse and not infection.)

He and all the other staff on that shift seemed bothered that I did not feel all that much better. The nurse who was handling my discharge papers seemed to be acting like the doctor. She refused to read off my screen, she told me conversation was pointless and she didn’t have to listen to me, and she talked louder and louder while I tried to type things (and did so when my hand was immobilized by her so I could not reply). She eventually accused me of being manipulative. (She did later apologize for this, and we settled that on a personal level, but I still find the accusation significant.)

I find accusations of that nature frustrating because I don’t really know how to manipulate people in situations like that (if I did I’d manipulate things so that I didn’t get the degree of nastiness some professionals seem to like bestowing on me). And then I have to find out exactly what I’m doing that someone else is seeing as manipulative. She finally told me that the reason I was “manipulative” was because I seemed to want to be admitted when the doctor thought I should be discharged, and because I kept saying that I wasn’t feeling much better. (Well, I wasn’t, and in many ways I felt worse.)

In reality, I just didn’t want to be sent home before I was actually doing well enough to technically be sent home. The discharge papers she had in her hands told me to come back if I was experiencing several things that I was right then experiencing. I did not want to leave and have to come back in a few hours, and I also really wanted to be able to see people who worked in the field of asthma (including one who’d told me he could treat me, but only if I came in through the ER because of hospital rules on how admitting worked) rather than harried generalists who mostly dealt with things like broken legs, and especially rather than a Shift From Hell. I don’t enjoy bouncing back and forth between home and the emergency room, I would rather stay a bit longer and get things really fixed, and then go home and not have to deal with medical professionals at all.

This all by the way was in sharp contrast to the day before. The day before, there had been some concern over whether I was being treated respectfully, but that had been taken care of. The doctor the prior day had not been the most amazing doctor in the world or anything, but he’d listened to what I said about what I was experiencing instead of seeing me as a series of numbers on machines. When they got me stabilized, they waited until I was actually stable — with a peak flow high into the yellow zone with no danger of falling into the red zone at the drop of a hat, and without the feel that I was working really hard to breathe — before discharging me, and they talked to me about how I was feeling to make sure it wasn’t a case of the numbers being deceiving. By the time I left, I was no longer lethargic, I was sitting up a little bit off of the bed, and I was back to my usual fairly fidgety self (when I’d come in I’d been too limp to keep my arms on the stretcher). I was quite happy to leave, both because I hate emergency rooms and because I was genuinely feeling a lot better. Not feeling good — I was still really sick and couldn’t move around a whole lot — but feeling better and as if I was continuing to improve, and not in any immediate danger. I know my body — at least my lungs by now — and I can feel the difference.

Anyway, I was later talking to a friend about the woman who called me manipulative. My friend told me that the woman was saying the word manipulative, but meaning the word “impertinent”: I didn’t know my place. I was telling a doctor he was wrong about how my body felt. I was trying to actually get treated enough to be genuinely stabilized, when they just wanted me out from the moment I got there. My body itself was impertinent enough not to fit into their plans for me, not to be magically fixed after the holy invocation of levalbuterol, and I was impertinent enough to be a real person and not the mannequin I was being treated as.

Not that this entirely surprises me. I have a friend who was ordered out of the same emergency room at gunpoint while unable to move her arms and legs and provided with no wheelchair. (They called security because she was “refusing to comply with her discharge” because she couldn’t move.) I talked to a cab driver who was told by the doctors at this hospital that they would not help him prevent any further heart attacks (he’d already had one), and that they’d only treat him if he had another one. When he said “What if the next one is my last?” they said “Then it won’t matter to you, will it?” The cab driver I got on the way home this last time used to work there as a janitor and said a lot of the doctors and nurses were really nasty to people they saw as beneath them, which happened to include both patients and janitors. I’ve heard a lot of horror stories about parts of this hospital (although other parts of it are really good and I’ve had no complaints about those, just as some people and shifts in the emergency room there are decent).

I talked to my pulmonologist about the whole thing and he said that they get frustrated when they can’t fix people and take it out on the people who aren’t being fixed.

What’s really hard to determine in these situations is when and to what degree there’s discrimination going on and to what degree it’s just people who are having a bad day or mean to everyone in general. And when it’s discrimination, what kind? I’m a woman, I’m cognitively disabled (and come with an entourage from the agency for developmental disabilities), I have a psych record, I’m physically disabled, I wear tinted glasses indoors, I’m fat, and I’m poor (translation: entirely on federal and state assistance for medical insurance). I’m never sure which one of these things, if any, medical professionals are reacting to when they treat me as “less than” other people dealing with identical medical complaints.

And unless I see how others are treated, I don’t always notice how the way I’m treated differs. I recently had a particular urgent medical treatment bumped up sooner not because I was in agony or infected (and I was both), but because I let them know I needed to be at a fairly prestigious university consulting with them on something by a certain date. They were otherwise going to wait a length of time that would be unacceptable for a non-disabled patient with the same problem (I would still, today, be waiting, for a problem that was generating pain almost as high as you can go on the pain scale). When I was a teenager, my parents were told explicitly that people like me didn’t need dental care, because we had no use for nice-looking teeth (my parents blew a gasket and got me a new dentist). But most of the time things are more subtle than that. A more recent dentist denied to me that obvious jaw problems were rooted in any kind of mechanical problem (the jaw specialist barely had to look to figure out that wasn’t true), said that I probably just moved it around too much on my own, and tried to tell me that an infected tooth was probably just red from me touching it, and that the searing pain down the nerve that it was tangled in was probably from me touching my face too much. (He had no basis for thinking I was running around touching my face. And I have experimented since I got the tooth out, and I can hit my face and be unable to replicate that nerve pain even if I hit it in the exact spot the nerve is closest to the surface.) I learned later that a dentist at the same practice had angrily and violently cranked open the mouth of an autistic girl who was too slow in obeying him (her mother had taken her home immediately on seeing this). This was a place that gave good dental care to people who were non-disabled.

But it’s hard to work out what’s going on, when I’m in the middle of it. I have only had a short time in childhood to remember being treated as somewhat normal, and even then I was treated like a child because I was a child. I’m never clear on how adults are treated by doctors in general. I am stunned when I find out that adults with near-identical medical issues but who don’t look developmentally disabled are actually treated with respect. I am even more stunned and awed when I am treated with respect. I tend to experience what other people would consider normal medical care as an amazing miracle, which I shouldn’t, but it’s hard not to fall into that trap when you’ve had your bar set way too low way too long. When I go to a medical professional who treats me the same as any other patient, I feel like an interloper in a world I’m not technically allowed into, and wonder when they’ll discover I’m not allowed and throw me back.

As a result, I often delay or fail to push for treatments most people would get. I’ve only recently been pushed hard enough by friends to try to start averting crises before they turn into full-blown crises, which I’m told is how most other people do it. I’m sometimes more afraid of medical professionals than I am afraid of death.

These things aren’t unique to me. I know a guy who walked for years on a dislocated leg that nobody treated because he was developmentally disabled. I have known several people that doctors refused to treat at all for life-threatening conditions until someone else screamed at them loud enough. (Most of whom are still alive.) I’ve seen medical professionals justify the deaths of people around me as being better than their lives. I’ve even had one former professional confide in me that he used to work in institutions for people like me, and that he used to stand over people’s beds agonizing out loud about why they were alive at all. (He seemed to think I would feel sorry for him on this account, instead he scared the crap out of me.) I’ve heard (and experienced) story after story of people with developmental disabilities and people in the psych system in particular (not to mention those of us who are both) being considered manipulative, or task-avoidant, or behavior disordered, or some other such term, when still trying to function with levels of pain that would put most of our so-called able-bodied caretakers in bed. Because our role is to be in certain places at certain times for certain people, and anything, even pain or illness, that gets in the way of that, is judged manipulation and attempts to get out of what we should be doing, by default.

It’s not the entire medical profession that’s like this, but it definitely seems like if you’re disabled — and some kinds of disabled more than others — you simply don’t get proper medical care. Few people actually say outright that’s what’s going on, but the pattern exists, and it can’t be denied the more you look at it.

Our bodies will continue to be impertinent enough to exist as they are and not as someone else fantasizes them to be. And unless something changes, the default judgment of our reactions to our bodies as they are will to be considered manipulative, or behavior problems, or anything other than what it would be in any other person experiencing the exact same thing. And our impertinence and the impertinence of those around us — otherwise known as advocacy — might be the only thing that allows us to survive in the meantime, whether we get called names for it or not.

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38 responses »

  1. Amanda – the treatment you received at the hospital was abominable – but probably the norm. Many years ago, before the hospitals were as “busy as they are now, because of government cutbacks, etc” I went in with severe pain in the guts; I figured it must be gallbladder. After waiting 5 hours in ER (that was typical back in 1989 – now it is higher)- I was given a prescription for Gaviscon. I tried to explain to the so-called doctor that antacids gave me more heartburn and were of no use and that it was definitely not an “upset stomach”. I was doubled over and couldn’t even sit up straight.

    Later on, I had an idea: I looked up symptons of gallbladder problems in my trusty old medical book and described them much better the next time I saw a doctor. I embellished somewhat, but used textbook explanations. I didn’t, of course, deign to suggest that it might be a gallbladder problem – just feigned ignorance (doctors love that). A few months later I had the surgery – the hospital stay was another story. Suffice it to say I spent one full night laying on the bedpan because I couldn’t get off and on it and I didn’t want the unsympathetic nurse to come back and try to wrench me to my feet to go to the bathroom as she had several hours after the surgery. No one likes a bedpan – if there was any way possible way I could have gotten up, I would have. All my damn stomach muscles were cut (the old way of doing the surgery) and I could not pull myself up with the bar above me to a sitting position and get out of bed. I have never felt so helpless.

    The doctors/hospitals don’t just dismiss, ignore, condescend to, patronize, terrorize those with disabilities – it is universal. I am pretty sure I passed a kidney stone once at home. The pain was excruciating – but I figured, rather than go to Emergency, I would take my chances. If I was near death, then I would’ve phoned (if I could) an ambulance. That’s how well-trained the medical profession has me. In your case, you would think that at least breathing difficulties would qualify for some attention. All the signs up in doctors’ offices and hospitals in Canada say people experiencing breathing difficulties have priority. And these people treat us as if WE are the “jokes”.

  2. Heavens on Earth (well, Hells on Earth) does this sound familiar. Every/any time I’m sick/injured/throwing up we go through that. My 2 (un)favorites are “just dehydrated”-a potentially deadly condition-and “Some things can’t be fixed”. We aren’t asking miracles, just no more seizure clusters!

    I still think health ‘professionals’ need a seminar in dealing with people with cognitive disabilities, given by cognitively disabled people. Like that’ll happen….

  3. Your experiences are more extreme than mine, but there’s a whole list of medical problems that I after years of trying have just given up trying to get any help or even explanation for (and the situation certainly hasn’t improved now that I’ve thrown away chunks of surface NT emulation to function despite burnout).

    Hope you’re alright under the circumstances. I was too distracted to ask what was amiss yesterday.

  4. i was thinking… i was ‘trained’ all my life to have as little as possible (within reason, of course) to do with medical (or psych, for that matter) professionals… so i have not much personal experience… but it seems to me that prejudice against PATIENTS is bad enough… even if there weren’t extra prejudice against DISABLED patients.

  5. To be brutally honest I think in their heart of hearts these people who are going on about how you are manipulating them know full well you’re not. It’s just they are so stubborn that they can’t admit they might, just possibly, be wrong and you might be right (especially as to how you are feeling). So because they know this and they don’t like that they know it, they turn their annnoyance onto you and try and justify it to themselves. Which is inexcusable.

  6. The kind of care that emergency room gave you is utterly inexcusable. I have noticed over the years that I tend to have a different view on medical care than most. I think it’s because my father is a well-known doctor and therefore I automatically get the kind of care that ought to be universal.

    The older I get, the more it irritates me to know that the same people who treat me properly may well be doing this sort of thing to other patients.

  7. I think some of them do know that I’m not being manipulative. Because some of them were being what I’d consider manipulative — avoiding or deliberately contradicting the truth in order to get me to do what they wanted.

  8. Unfortunately, while your disability and state insurance had much to do with the poor treatment you were given, being female and not typically attractive or likely to bear children was certainly a contributing factor. Studies have been done supporting this theory, and, in my own experience, as I age and have gained weight the responsiveness and care of many health care “professionals” has gone way down.

    I have had to change doctors (at least I can do that) more than once when the current doctor I had refused to believe that I was not getting better under his care. Happily, I now have a doctor who does listen, a rarity. And I talk to him on his level.

  9. While all of this is absolutely true, it does not exist in a vacuum. Due to a family member being sick, I went into hospitals on an almost daily basis for two years. One of the things I learned was that there are people who frequent hospitals or other health care facilites with the clear purpose of suing doctors or nurses. This is actually their vocation. These people don’t constitute the majority, but because of the ramifications of their actions, their presence often has a stronger and long-lasting mental effect on doctors and nurses, and alters the way these professionals act significantly.

  10. observer:

    Until now I had not heard of people who exist to sue doctors and nurses. But I have an instinct that that is not the true cause of this kind of mistreatment directed at patients. (And I have another instinct that there are far fewer professional hospital-suers than some people might believe.)

    The reason I don’t think it’s the true cause is because I’ve heard things like this too many times before. I’ve heard about “welfare queens” as an excuse for mistreating or hating people on welfare. I’ve heard about “those people who scam the system” as the reason for the draconian and dehumanizing hoops disabled people have to jump through to get benefits. I’ve heard the same “scammers” being used as excuses to vilify blind people who read books, wheelchair users who stand up or wiggle their toes, and people with unpredictable fluctuations in their daily ability to do things.

    For that matter, I have known people who justify their misogyny from a “bad experience” with a few particular women, their homophobia by a “bad experience” with a few particular gay people, and their racism by a “bad experience” with a few particular people of color. (“Bad experience” is in quotes because it’s not always something that was actually done to them, but sometimes something they imagined or misinterpreted.)

    And at the end of the day I can’t see the existence of professional hospital-suers as the cause of mistreatment or bigotry directed at patients, I can only see it as an excuse, like the other excuses I’ve just described, and many other excuses I’ve seen for ableism, racism, sexism, etc. It has the same ring to it. (I’ve been meaning to write about other forms this sort of reasoning takes for awhile now, but never gotten around to it.)

    I have seen some real pieces of work in emergency rooms (usually drunk people), but given that I in no way fit that profile, I can’t see being mistaken for that. (Also, if anyone knew my full medical history, they’d know that I have had multiple times actual cause to sue doctors for malpractice and have never done so. But I assume they couldn’t know that just by seeing me.)

  11. I’m sometimes more afraid of medical professionals than I am afraid of death.

    Some of us feel this way too. We’ve put off getting medical help for a lot of things we *could* technically get help with, and still are. Sometimes it has to do with the type of complaint, too. Anything pain-related, anything that appears to be “pain for no reason,” we’re afraid to ever bring to the attention of a doctor, because we’ve heard too many horror stories about people being told it was all in their head. We don’t want to waste our time and suffer that humiliation; we’d rather just live with the pain, in many cases.

    …and then there’s also the fear that they will recognize the condition as being legitimate, but then refuse to give us any of the things that experience or others’ accounts suggest would actually help us. We had a nurse once who correctly diagnosed us with something we’d actually self-diagnosed with– we were kind of shocked, because a lot of people miss that particular condition, diagnose it as something else or don’t even believe it exists– but then went on to try to insist on getting us to try a “special diet,” rather than prescribing us anything. No, sorry, tried that, doesn’t work– tried cutting several different foods out, actually, some of which we still don’t eat. Removing them can reduce some symptoms, but that’s really not the same.

    …oh, another one for the “manipulative” list: knowing more about a condition you have than the doctor does, and trying to educate the doctor about it because it’s obvious they know almost nothing about it other than as a footnote in some textbook. :p

    Right now, we’re at the point where we still can’t get up the will to be able to subject ourselves to poking and prodding and condescencion and suggestions for treatments we know won’t work, and being told “it shouldn’t be like that” as if the fact that it was somehow meant there was something morally wrong with us, rather than coming up with ways to treat the things that shouldn’t be like that. I know there are doctors out there who won’t do that, but the problem is taking the risk of subjecting yourself to the ones who do until you find that one who takes you seriously and knows what they’re doing.

  12. I know there are doctors out there who won’t do that, but the problem is taking the risk of subjecting yourself to the ones who do until you find that one who takes you seriously and knows what they’re doing.

    Luckily I went to one of those (my GP) today. And he looked at what meds I’d been put on and asked why on earth I’d been put on another antibiotic (which I just had an allergic reaction to) when I was already on one that was nearly identical in its actions, and I told him the entire bizarre ER story. And he’s straightened out my prescriptions and everything to something far less likely to cause trouble, and far more likely to get me through this without it turning into a major crisis again.

  13. The idea that professional hospital-suers would make medical professionals *more* likely to do exactly the kinds of things that they can be sued for (ignoring patient rights, failing to obtain patient consent, discharging patients who are still obviously in need of care) is rather strange to me. Also, Amanda, I would have thought that the fact that you “come with an entourage from the agency for developmental disabilities” would make medical professionals more likely to respect your rights, since there are other people there watching what they’re doing. Why would that ER doctor tell you that you had very little say in your treatment? Does the law back him up on that statement?

    I’m not asking these questions because I doubt that medical professionals behave this way–I know from personal experience that arrogance, disrespect for patients, and ignoring of patient rights is rampant in the medical world, and I, too, dislike seeing doctors for just that reason. But it just… *baffles* me, how these people who are no doubt both skilled and reasonable, can behave so unreasonably and incompetently, not to mention unethically. I mean, aren’t they afraid of the law? A little? Man, I get so boiling mad whenever I think about this issue, but not only that–I am *confused*. How can they break the rules with such impunity?

  14. Solaesta: I think there’s often a perception (and often it’s a true one) that staff from agencies are not there to supervise the doctor, but rather to supervise the disabled person (who is presumed to be the equivalent of a child and possibly a naughty one). These agencies tend to also have high rates of abuse of power.

  15. As noted in your post, patients and their families face a crisis in the delivery of healthcare at the hospital bedside. So many punits talk about healthcare reform, but little is included in the discussion about the issues you raise.

    As someone who has spent many years at the hospital bedside helping patients and their families get the care they deserve when they need it, I have identified three primary problems they face: (1) miscommunication (or a failure to communicate) among healthcare professionals, and between healthcare professionals and patients and their families; (2) conflict among healthcare professionals and between healthcare professionals and patients and their families; and (3) medical error. Miscommunication leads to unnecessary conflict causing medical error.

    I think it important for you and your readers to note, there exists a subculture in every organization, especially in hospitals. This subculture consists of both medical and non-medical professionals. The hub of this subculture consists of, what I call, “embedded laypersons.”

    “Embedded laypersons” have been inserted into the hospital over the course of the last fifteen or twenty years in response to changes in the law and in the process by which all hospitals are evaluated. In other words, hospital administrators have been forced to accept these “embedded laypersons” to comply.

    My advice is this. You don’t have to deal directly with difficult doctors or nurses. It is clear that your rights as a patient were violated. You need to fight for those rights, but, at the same time, you don’t want to alienate your providers. Tap the subculture and build a network of relationships with people who will serve as your intermediaries. People from within the subculture will help you fight for your rights, while also helping you maintain good relationships with your providers.

    Let me give you an example. One such “embedded layperson” is the hospital chaplain. You may say, ‘I’m not dying! Why would I need a chaplain.’ Well, only 25% of their time is spent ministering to spiritual values at the end of life; 75% of their time is spent clearing up problems of communication and mediating/resolving conflicts, and helping patients/families cope with medical error.

    They are a virtual treasure trove of valuable, inside information and contacts. Begin to form your own personal, in-hospital network of support (at no cost BTW) with the hospital chaplain. You can do this from anywhere in the hospital, including the ER.

    Take my word for it as a healthcare professional, when you befriend a chaplain, you befried the staff. Once you anchor your network with the chaplain, together you will then be able to identify other medical and non-medical professionals who populate the hospital’s subculture to help you clear up problems of communication, medicate and resolve conflict and deal with medical error.

    I guarantee this works. You can get the care you deserve when you need it by tapping this subculture and building your own network of relationships with people (both medical and non-medical) who will serve as your intermediaries.

    I don’t mean to toot my own horn here, but this missive is running a bit long. I show you how to build such a network using only the house phone and the hospital operator in a book we just published at the National Institute for Patient Rights and that I wrote entitled, 3 SECRETS HOSPITALS DON’T WANT YOU TO KNOW: HOW TO EMPOWER PATIENTS. Again, please forgive the plug but I felt I had to contribute to your post. The book is available at our web site http://www.empowerpatients.com.

    Please email me directly if you should want further advice or clarification at empowerpatients@gmail.com.

    Dr. Mark E. Meaney
    President and CEO
    National Institute for Patient Rights

  16. Some doctors are idiots, some are jerks and some are both. I am fairly normal (some autistic tendencies, maybe Aspie), but have been treated badly in the ER. Went in once, 10 days after major surgery, vomiting,with severe abdominal pain. Was sent home, told it was just a stocach bug. Returned the next day by ambulance, with septicemia. I learned while waiting for my hernia repair not to bother going to ER with pain that doubled me over. If you can stuff your internal organs back into the hernia, it is not an emergency.

    A month ago, my husband was doubled over in pain, so I took him to the ER. They actually ran tests and gave him treatment. Being female means the pain is just hysterics.

  17. I’ve had mixed results in terms of my relationships with pdocs. It actually took two years for me to get the help I needed because I wasn’t being taken seriously by the first psych I saw. Or at least that was the vibe I got from him. I’m always sensitive about things like that anyway and not really knowing how to read NT nonverbal language makes me really cautious. The second person I saw, a PNP, was a bit better but I still felt like he wasn’t listening to me. The third one was off-campus, and he ultimately dropped me because I kept forgetting/missing appointments. I tend to forget stuff really easily, even if it’s written down. Add to that having to use public transportation and being stymied when one day I had to get on a different, unfamiliar bus with an entirely different way of signaling a stop, for example, and it’s no wonder I missed appointments.

    I’m on pdoc #4 and he’s pretty good. He listens to my concerns and is willing to work with me, not from a paternalistic perspective, but actually treating me as though I’m not entirely ignorant about my meds. So many docs complain that patients don’t know about their conditions or meds, yet when they come across those who do, they’re seen as manipulative. That’s a wtf-worthy thing right there.

  18. Pingback: L’azile » one of the many faces of disablism

  19. In reading “1984″ so many years ago (high school) I seem to remember that there was something about “a boot stamping on a human face” or how everything was just about the power relationships between human beings. If ever there was an example of this, it is most members of the medical profession — particularly doctors and nurses — and those unlucky to be sick or disabled and need medical services. The med. profs. know that they have us over the proverbial barrel, and they take advantage of every minute of it — simply because they can. It is telling that patients, including me, speak of the few good medical professionals with a combination of gratitude and wonder.

  20. A month ago, my husband was doubled over in pain, so I took him to the ER. They actually ran tests and gave him treatment. Being female means the pain is just hysterics.

    That’s exactly what I’m afraid of being told, and why we don’t like to see doctors. (Actually, the one who’s taken us most seriously about pain was a chiropractor, not an MD. He couldn’t help with all of it, but he believed us and asked exactly where the pain was in certain areas and so forth.)

    The whole idea that disabled patients need to be treated like naughty children is something that doctors seem to project onto women also– and even female doctors do it.

  21. Yeah that’s the same reason it took me so long to be diagnosed with hypermobility. I had joint pain all over, but I knew it wasn’t arthritis. And I had a few specific joints that popped out of place and/or got really wobbly and hurt a lot, and I’d managed to sprain (and permanently bend) a finger once without even moving it that hard against anything (I was reaching fairly gently for a book), but that didn’t fit into any category I knew of.

    It wasn’t until a guy asked me specifically and out loud, after examining a dislocated joint, whether I had joint pain all over, that I answered yes, and was afraid of whatever he’d say to me. (I had left that question blank on the questionnaire he’d given me.) I was shocked when he had a plausible explanation for it.

    But I’d never have learned that without prodding, because I wasn’t going to go through another round of “It’s not arthritis so it must not exist or be all that painful if it does exist and we have no clue what’s going on so it must not even be real.”

    (And I have learned, by the way, in the past few days, that ankle braces are amazing on bad days. I can go from searing pain with every step to almost nothing if I put them on, although I’m trying not to overuse them.)

  22. What a tale of woe in the most medically advanced, civilized country in the Western world! [or so everyone keeps telling me]
    Sounds as if the professionals all need to be issued with a dictionary to save them from terminal arrogance.
    Best wishes

  23. I wonder how much of this attitude is because of many professionals really believing in evolution. I don’t mean the classic “and it took the earth millions of years to …” but the “human beings evolved gradually so that idiots are at the bottom -next comes the negro and then the oriental ” etc. I’m using terms used by the textbooks from way back when. It wasnt until I met a professional who told me with a straight face that ” in evolution certain parts of our brain were not developed and thats why this persons brain cannot function because those parts didnt evolve” I am paraphrasing but thats what he meant. I sat there first in shock that someone of his background would actually believe it and second in horror that “this man could start the American Holocaust all over again” There is absolutely no medical documentation that the individual in question was missing ANYTHING. But it makes sense when you realize that these “professionals” have spent their entire lives competing to get into nursing or medical or whatever training class they got into. Then competing to get the best job -then competing again to get to the top rung. So of course they believe that they are the best and poor lowly you just hasnt evolved enough to be able to earn the right to join the competition. Most of them seriously believe that unless you prove that all your body parts can function then you arent really qualified to be in the human race. I also read recently that even up until the early 1900′s doctors thought women were comparable to small children in thinking.
    I think you hit on the main issue -that you consider yourself equal to them and thats something they just can’t deal with. After all THEY graduated from medical school with top honors so how dare you think that you may as intelligent as they ?
    Thanks for all the issues you bring up. I think the more people can talk about them the more attitudes MIGHT change. YOu do give hope that someday people I know and love will be treated with respect.

  24. mcewen,

    “the most medically advanced, civilized country in the Western world! [or so everyone keeps telling me]”

    Actually, that’s the most advanced medicine that money can buy. *grin* It’d be nice if we could find a way to combine the options and variety of capitalistic medicine with the availability of socialized medicine. Without the money to buy it, the medical care in this country is pathetic.

    I’ve been dealing with a herniated disc that everybody who’s given a professional opinion agrees needs surgery but that I haven’t been able to get surgery for. It’s been over 6 months, and part of this involved a trip to the ER where I was physically unable to sit, had to stand on crutches for over half an hour, and was told it obviously couldn’t be that bad because I was mobile. I left in tears and agony, and I detest crying in public.

  25. In response to Zaecus, Dr. Meaney says:

    You might be interested in learn of the recent release of the results from a Commonwealth Fund study of the healthcare delivery systems in all industrialized nations. While your intuitions prove correct, the US ranks at the top in terms of the best cardiologists, nephrologists, etc. anywhere in the world, the study proves conclusively that we have THE MOST fragmented, uncoordinated healthcare delivery system IN THE WORLD.

    Couple this study with the Press Ganey Associates survey study involving 1.5 million patients and over 2,000 hospitals. Conclusion: there is a “communication disconnect” between providers and their patients/families. Patients and their families routinely feel ill-informed about diagnois and treatment options. This leads, of course, to a widespread violation of our most fundamental right as patients and advocates: the right to informed consent.

    We have only to connect the dots between the Commonwealth Fund study, the Press Ganey study, and the recent report released by the Institute of Medicine out of the National Academy of Sciences. Up to 98,000 patients died in ONE YEAR ALONE as a result of medical error, making medical error the seventh leading cause of death in the US, AHEAD OF MOTOR VEHICLE ACCIDENTS!!

    Moral of the story: the fragmentation of care leads inevitably to miscommunication which leads invariably to unnecessary conflict, which in turn causes medical error.

    Dr. Mark E. Meaney
    President and CEO
    National Institute for Patient Rights
    http://www.empowerpatients.com

  26. Mencap recently produced a report ‘Death by Indifference’ detailing the fatal results of similar interactions with medical professionals in the UK:
    http://www.mencap.org.uk/html/campaigns/deathbyindifference/index.asp

    Dr Meaney has said some good things, but he misses out that some doctors are complete and utter bastards. They don’t just treat patients like this, they treat the staff and everyone they come across like this. Since it seems to be impossible to sack a doctor before they’ve killed at least a few patients, they fester and make sick departments. I think that some people get into medicine simply for the power trip.

  27. I’ve not had too much interaction with ER’s, but I have noticed an extreemly moralistic bent in some of the people working there. Also, I think there is something psychological that happens with doctors when they can’t “fix” someone.

    That is to say, they view their job as making people “normal again” — in the most stereotypical Normal Rockwell sense of “normal”. So, if someone is atypical, then maybe to them it’s like fixing something that’s broken in other ways that they can’t fix; “I could be fixing people who I could really fix (make normal). What a waste of my time & energy this is.”

    I doubt this is often conscious, but IMHO something like this is often operating under the surface.

    And with the moralism, I’ve heard a doctor who’d had Lyme disease treated with long-term IV antibitotics (or whatever they used; this was before newer oral drugs for Lyme), describe keeping a card in her purse explaining the needle marks on her arm. This was in case she was in a car wreck, etc., and was brought to the ER unconscious, because — according to her, a physician — ER staff will basically triage anyone with needle marks last. And if you die, I’m sure they sure they don’t mention to your relatives that you were skipped over for less injured patients because they assumed drug use.

    I find that thinking incomprehensible, but a physician told me this, and every time I’ve been in the ER, there has been endless questioning about drug use (I don’t use drugs) until the lab reports or something else show undeniable proof it’s not drugs.

    Also, not showing pain or discomfort normally. (uh, in case that isn’t obvious already…) “It can’t be that bad. You don’t look like you’re in pain/that sick” — I luckily made it to my car before I lost it that day.

    The way they treated you is inhuman & immoral. There’s no excuse for it. It’s good you do have some doctors who listen treat you like a human being, though.

    Anyway, I’m just blathering out disconnected thoughts, here.

    I wonder what would happen if a patient said to an ER doctor “You’re fired. I want somebody else”?

  28. (I meant to include this in my other post, but hit send too soon.)

    I remember reading an article about dehumanization among prison guards, law enforment officers, and ER personnel. I can’t remember the citation, but the gist of it was that people who deal with people too much in such capacities can burn pit and end up viewing people as just lumps of flesh.

    Re: what Kathy (#1) said: I’ve played dumb also and that does seem to makes things go better. IME I have often had lead them to the right answer or test(s). It’s wierd sometimes we have to pay these people.

  29. Impertinent is a good word. I always liked “uppity,” because it was basically invented to describe people who didn’t believe in their own inherent inferiority and refused to accept discrimination.

  30. I’ve been a steroid dependent /severe persistent asthmatic, since birth.
    With over 80 hospitalizations, I can totally relate.
    Excellent site!

    btw I’m also a Respiratory Therapist and I had 4 years of formal training and 28 years of working in the acute care setting.

  31. Wonderfully written post. Seems to me it’s a lot about listening and not writing people off.

    I’m avoiding doc stuff myself. It could be important, I dunno. Some follow up I don’t remember the doc telling me about, that I found in the medical records I had sent. Personally, I’m tired of seeing the “abnormal psych” blank checked in my med records – just because, for example, I suggested my high blood pressure reading was “white coat” hypertension and/or made higher by being in a waiting room with a screaming child for one hour prior.

    For those of you (us?) who have disgust, distrust or fear of medical stuff, I do understand it’s not a phobia. Phobia is *unreasoned* fear.

  32. I have had many events like these. I’m a multiple and have been in locked wards, in one a staff person accused me of manipulating because I was speaking in a child voice. I can’t quite recall, but I think I was literally sent to my room. I wrote a long letter to her explaining that the person who was speaking was a child. I think the whole thing started over me drawing on my hand which she saw as somehow both pathological and dirty, it was marker for god sake. I am also physically very over weight and time and again doctors will tell me an issue is because of my weight when they haven’t been able to find what was causing it. This includes my knees, which I injured in high school, they often hurt and they make a grinding sensation when i bend them. I was sent to an orthopedic specialist who looked at x-rays and said nothing was wrong with my knees, except my weight, when I put his hand on my knee and made it go crunch he did backpedal a bit and say it might be a “pre-arthritic” condition.

    I did have one doctor apologize for assuming that something was just because of my weight when tests came back saying otherwise, the condition he found was serious but then it disappeared when I was finally able to follow up on it. Also when you are in a locked ward getting actual medical attention is really hard. And conditions there are very unclean often so I get sick. A nurse there told me that I had a somatic element to my psychiatric illness because I got a lung infection and some skin problems. Around the same time I broke a tooth, and was only able to get it taken care of after I left the hospitals which was months later. By which point it had decayed so badly that it required a root canal and of course since I was on medicaid crowns were not covered, the dentist did the best he could do for me. I have since moved to another state that only covers emergency dental for adults, apparently defined by severe pain. When the tooth broke again I was at first told I could even get it pulled because there was no pain due to it not having a living root. I did get a call later from someone there saying that I could have it removed, haven’t tried to yet though.

    Another unfortunate practice of the level of care available to someone on medicaid is that one is only allowed to mention one issue per visit, I don’t always know which symptoms are connected but the point is I can only talk about one thing. So any long term issues are always put aside for whatever immediate symptom I have.I hate how the system works.

    Sorry if this rant is too long.

  33. Doctors, nurses and other caregivers are paid to listen to patients…It is part of the job….and like the other commenters I’ve been misdiagnosed, ignored, suffered unecessary pain etc etc….

    They aren’t “better” than us…they’re not doing their job.

    Manipulative? No. Necessary assertiveness to get the right care…yes.

  34. This is only tangentially related, but I remember on one occasion one of the cats was meowing at the empty food bowl and our mother called the cat manipulative while getting food for it. We had tried to explain that it wasn’t manipulative, it was hungry, or even if it was manipulative (trying to get someone to do something you want), it certainly wasn’t wrong. But the mother didn’t understand. Fortunately, she feeds the cats regularly and they don’t go hungry or thirsty. They just get called manipulative.

  35. Oh, that’s awful.

    It is, unfortunately, all too common. Like all of the other voices here, I’ve had plenty of experiences of just being ignored, or told it was nothing, or told that “well, you’re more sensitive to sensory stimulation than most people, so things that wouldn’t bother us bother you. Obviously, it’s nothing then!” Nearly everyone talking at Tiny Cat Pants the other day had similar stories.

    While there’s a lot of it having to do with specific prejudices and individuals being jerks, a lot of it is structural, and a lot of it is taught. We push our medical personnel to the limit during their schooling, and then set crazy hours for them while they work. HMOs and medical billing and malpractice issues make nearly every decision a nightmare cloud of paperwork, and as the doctor pointed out earlier in the thread, our system is amazingly stupid in its construction.

    I had a simple visit to the ER one day (for them to give me an ultrasound and tell me nothing was wrong and here, have some Vicodin for the pain that is clearly nonexistant because it doesn’t have a cause that shows up on the screen… even though I told them that the thing likely lodged in my uterus was plastic, and the nurse had never heard of it and didn’t know where to look…), which resulted in me being (mis-) billed by three separate entities for five separate things. For the doctor’s time in the ER. For the use of the ER itself. For the use of the specific machine/technician to read the machine. For being in the hospital at all. And for having insurance.

    All of those people have to communicate across agencies, across billing scaffolding, and across personnel (with different tracking numbers, differing lengths of appeal time, and differing responsibilities toward each other)… and almost all of them insist it’s not their job to track down the information they don’t have. Which isn’t insane, from their perspective; with so many players in the game, they’d be hemhorraging money left and right to keep up with things that are really “somebody else’s fault.” Besides… we’re all forced to sign papers saying that (contrary to all written law on the matter), we will pay all parties involved in the matter if anyone anywhere along the chain fucks up. Why would the companies talk to each other if that’s the case?

    (That was sarcasm, in case it didn’t come across clearly)

    Everything works like that in hospitals. I worked in one for a little over a year, and that was.. eminently true then. I have no reason to think that it’s changed in the past…seven or so years.

    Given all that, and given the incredibly stupid ways we think about time and work in the medical profession…. you’ve got teams of incredibly tired peple under huge gobs of stress with highly fettered access to the information they need and regulations so numerous and complex the IRS would be staggered. Not a good combination for competent work period, let alone competent, compassionate, thorough work. They don’t get paid enough for that.

    And, realistically, the way things are structured in ER-like and clinic-like cases, the pressure to “treat ‘em and street ‘em” is amplified by the sheer numbers. If you giving good care to one person comes at the expense of giving any care to two, or three, or four… it might seem reasonable to simply make sure they aren’t going to die on you right that minute and let them fight it out with their primary care physicians or whoever else. (And, of course, to get there they have to forget that a lot of people don’t have primary care physicians, or are stuck with really restrictive HMOs, or simply can’t get time off from work/appointments when they need them/rides to the doctor on short notice.) For the primary care phsycians at all but the wealthiest sites, it’s the same thing. You could ask about everything that’s wrong with one patient and make sure they feel happy and respected, or you could hand out antibiotics to five people and referrals to two more.

    Conditions like these allows for the flourishing of latent racism/sexism/disablism. After all, it’s easier to believe that someone is making it up than to admit that you’re wrong, or that you’re going to have to do something time consuming (or worse – expensive and probably not covered by your patient’s insurance). And it’s easier to give substandard care if “they don’t really need it” or “they’re better off this way.” You can convince yourself of just about anything, if you have to.

    Add to that the explicit teaching… from the liability crazed billing issues (“give pregnant women C-sections because we have more control!” “Don’t run any expensive tests because they might come back negative and you’ll have to run more!” “Don’t give them options because they might pick the wrong one and sue you!”) to the confrontational models of treatment (particularly as regard mental illness and substance abuse issues). It’s actually written into the texts. Trained into people. This is how you act, if you want to get ahead/cure the patient/not get sued.

    Take all those things, shake and stir liberally, and you get this mess.

    (None of this, to be clear, was defending that system at all. I think it’s awful. But I was trying to convey the self-perpetuating nature of the problems. It’s not just that we’re unlucky and keep meeting jerks, but that the system brings out the jerks in otherwise nice people, and makes it difficult for the good ones to do their jobs as well as they’d like.)

  36. I’ve even had one former professional confide in me that he used to work in institutions for people like me, and that he used to stand over people’s beds agonizing out loud about why they were alive at all. (He seemed to think I would feel sorry for him on this account, instead he scared the crap out of me.)

    ++++++++++++

    I am sorry but I laughed out loud at this. “…he scared the crap out of me” made me just about pee my pants. WHy is it that there are people who seem to think it is okay to confess their stupidity to someone who is going to take it personally? Narcissism comes to mind- I feel bad, so they ought not live?? Unbelieveable.

    Anyways, inappropriate laughter I am sure, but only because I have met people like that and could see it come out of their mouths.

  37. Pingback: Personality disorders and PTSD « Urocyon's Meanderings

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