8 ms·

If someone comes to you with a whole lot of pain and loss of function, ignoring it and thinking it's just in their head/they just need to toughen up and get ove

• tomcam 9y ago
  MD's are by and large incredibly non-curious about hard-to-diagnose chronic conditions
  • o_____________o 9y ago
    What incentive do they have besides being a heroic, indefatigable person? If anything, they're increasing their attack surface for being blamed or sued.
    • komali2 9y ago
      Curious about this. I often find engineers motivated purely by the desire to solve the problem. Was just at defcon - witnessed many people vaguely wandering around the tables of teams trying to hack devices, then getting sucked in as they offered solutions and inevitably got involved with trying to solve the problem. Did it myself a couple times, even though I had planned on attending more talks.
      • koube 9y ago
        They hate solving problems when someone comes up to them with a strange and incomplete description and says "can you fix my problem"? The made a whole show about this called the IT Crowd where they play a tape that says "Have you tried turning it on and off again" instead of legitimately answering phones. https://en.wikipedia.org/wiki/The_IT_Crowd https://en.wikipedia.org/wiki/The_IT_Crowd Here's a subreddit where people complain about the problems that people bring them: https://www.reddit.com/r/talesfromtechsupport/ https://www.reddit.com/r/talesfromtechsupport/ Here's a subreddit for which the tagline starts with "Tired of stupid customers?": https://www.reddit.com/r/iiiiiiitttttttttttt/ https://www.reddit.com/r/iiiiiiitttttttttttt/ There are many problems in the tech field which are exceedingly difficult yet uninteresting. There are many problems that people bring that are vague descriptions that eventually turn out to be user error. It would not be surprising for the same phenomenon to exist in the medical field as well.
        • FLUX-YOU 9y ago
          The human body apparently has pretty terrible UI/UX.
          • taneq 9y ago
            It's not bad for something we found in a cave.
        • komali2 9y ago
          Huh, I had never thought of that - the daily issues that patients bring a doctor I can see as a parallel to an engineer being presented with "can you fix my email?" - complete with user stupidity - "My heart don't feel good" "Did you quit smoking and start exercising like I told you to?" "No."
  • gozur88 9y ago
    Because as a society we can't spend ten million dollars on every patient with a hard-to-diagnose chronic condition that may just be stress. It just isn't practical.
    • narrator 9y ago
      Stress can show up as chronic cortisol elevation which is not an expensive test. Instead we get the cheapest cure of all: gaslighting.
      • gozur88 9y ago
        That's just false, and pretty insulting to the medical establishment.
        • jacobolus 9y ago
          It’s false that cortisol can be easily tested? Or it’s false that many doctors tell patients that their unexplained symptoms are probably just psychosomatic and they should try to reduce stress, as a way of getting them to go away and stop asking for diagnostic efforts beyond the doctor’s current level of expertise? I’ve experienced the latter first hand, and know many other people who have also, none of whom were chronically stressed in any kind of unusual way, as far as I could tell. Maybe “gaslighting” is a slightly unfair name. I would describe it more along the lines of “patronizing indifference”.
          • alphaoverlord 9y ago
            Not op but cortisol is elevated in "just stress" as well as critical illness. An elevated cortisol is not a diagnostic test that can deferentiate between a serious medical problem and stress.
            • gozur88 9y ago
              Also, cortisol isn't always elevated when stress is the problem. So a negative test result doesn't really tell you anything, and a positive test result tells you something, but you don't know what that something is without a lot more testing, which may or may not tell you anything.
  • emodendroket 9y ago
    I found seeking treatment for RSI pretty frustrating until I went to an occupational therapist.
  • hycaria 9y ago
    So are programmers by and large incredibly non-curious about learning completely new stuff they will probably not even use so much, and for which they could make solutions with the tools they have. It's a job like any other. Some people don't want to go the extra mile because they have other priorities in life.
• noshbrinken 9y ago
  Unfortunately, CFS is not the only illness whose existence the medical profession generally refuses to admit. There are a host of other syndromes or symptom constellations that doctors can't find markers of and thus call psychosomatic. Generally, people suffering from these conditions congregate on message boards where they develop a culture and community. Sometimes this is truly productive research sharing and emotional support and sometimes it promotes alternative treatments of dubious efficacy and speculative science based on amateur readings of research. What's really overwhelming is the disconnect between the medical profession and the people they exist to serve. These people need help and yet doctors seem to push them away because doctors are too uncomfortable with a state of not knowing or not understanding.
  • saalweachter 9y ago
    At some point you start edging out of the realm of medicine and into the realm of expectations. So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with a longer tail list of possibilities. Runs some more tests, they come back negative. Now what? Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment. A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help? With no known underlying cause, CFS is as likely to be a variety of different problems, with similar, overlapping symptoms, as it is to be a single disease or condition. Some people "diagnosed" with CFS may actually have the same, currently-unidentified problem; some may have a different problem; some may have an atypical presentation of a disease or condition that we know about, and can treat. That last one is especially troubling: by labeling a constellation of symptoms, you have created a monolithic condition, in peoples' minds. If you tell someone they have CFS, because they match the constellation of conditions, they will stop looking for any other answer. If what they actually have is an atypical presentation of a known condition, they might never be diagnosed with it, because they miss the significance of new symptoms as the condition progresses. That's why a lot of good doctors treat unknown conditions in such a way so many patients find so unsatisfying. They rule out the likely problems, make sure you don't have anything unlikely that would kill you if left untreated, and then ... wait for more information. Wait for you to develop new symptoms, wait for new well-defined diseases to be discovered, and try to manage the symptoms as best they can be.
• bogidon 9y ago
  > Rarely it is psychological "Medically unexplained physical symptoms (MUPS) are physical symptoms for which no relevant organic pathology can be found. MUPS are very common, comprising up to half of all consultations in primary care and up to one third of those in hospital outpatient clinics.1 Some studies indicate higher prevalence; a landmark study of medical outpatients in North America with new complaints of common symptoms such as chest pain, dyspnoea, dizziness, and headache, found that an organic cause was demonstrated in only 16% of cases. ...Although MUPS are a major clinical problem and widely regarded as being difficult to manage,4 sophisticated approaches to management or even recognition of the problem are unusual, especially in hospital medicine." [1] I do realize that a case being marked as MUPS is not proven to be psychosomatic (psychological). Yet if even a small amount of MUPS cases are correctly diagnosed, there'd probably be enough of them to surpass the term "rare". Yes, ideally we would run every possible test on any patient that walks in with a stomachache. But there are limits to our economy and to doctors' time. It's a complex problem. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564157/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564157/
  • cestith 9y ago
    A stomachache is hardly the same as years of debilitating pain and fatigue. One might think a chronic condition that presents consistently enough in type of symptoms across more than a million patients may be worth considering as possibly physiological in nature. Certainly this team at Stanford believed so. The symptoms of this syndrome include pain, dizziness, and headache so that's three of the four you mentioned. The very story is about how this syndrome is often not diagnosed properly. That means that some portion of MUPS may be explained with the tests the team at Stanford is developing. Just dismissing it because there's not yet a great test is the problem they're trying to solve.
    • bogidon 9y ago
      The commenter to which I replied seemed to be extrapolating the idea past Chronic Fatigue Syndrome to all cases where patients are not successfully diagnosed for reported pain. Thus my argument was not specific to CFS. I agree that it seems unlikely for years of fatigue to be psychosomatic, but we won't know the numbers until there is a test.
• vacri 9y ago
  > if someone is in pain/unhealthy there is a reason. Rarely it is psychological Work in medicine, and you'll find a lot of malingerers. Some of them don't even realise that they're faking it. Yes, it sucks from your point of view that no-one believes you, but from the other side, a lot of people fake it, and you have to sort out what's actually going on. https://en.wikipedia.org/wiki/Munchausen_syndrome https://en.wikipedia.org/wiki/Munchausen_syndrome https://en.wikipedia.org/wiki/Munchausen_syndrome_by_proxy https://en.wikipedia.org/wiki/Munchausen_syndrome_by_proxy I used to be a neuro tech and have done a lot of EEGs in my time. There are enough people faking seizures to make it a non-trivial issue. Munchausen-by-proxy is a particularly sad problem, where parents make their kids sick in order to get some attention or compassion from others.
  • Sleeep 9y ago
    How do people fake seizures? Do they just flop around on the ground?
    • vacri 9y ago
      They just shake their limbs back and forth or their body. It's pretty easy for anyone familiar with seizures to tell a fake, since most fakers shake their limbs back and forth evenly - a sort of even sawtooth pattern of movement. However, jerky movement in seizures is contraction-relax-contraction-relax, contracting in one direction only, not back-and-forth jerking. People also aren't conscious during full-body seizures (though they are if it's partial-body), so if they're looking around focusing on things, looking at your response, or talking, that's a giveaway. One point to note, though, is that you can't just assume that everyone faking a seizure doesn't have epilepsy. Quite a lot of fakers do, and they fake for different reasons. A lot like the attention they get after a seizure. Others come in to have an EEG and think that they need to have a seizure to help the diagnosis, so they 'help out' with good intentions (not common, but common enough). Very very rarely you might encounter a real seizure that looks like a fake, though these are generally other kinds of seizures (various kinds of 'partial' seizures), not the full-body-shaking ones.
      • 9y ago
• luckman212 9y ago
  I'm glad you finally got some help. What was the name of the disease you were eventually diagnosed with?
• jeffdavis 9y ago
  It's probably not dismissal in the sense that they don't believe you. It's dismissal in the sense that they can't treat something effectively without a diagnosis.
• devnonymous 9y ago
  I find it amusing that one can so easily make an analogy with what you just described and the debugging of heisenbugs. How often do we as computer practitioners dismiss off user pains as just works for me and they are not-using-the-system-correctly?