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The Downside of Connected Healthcare: Cyberchondria

Posted by Soulskill on from the you-should-get-that-checked-out dept.

MollsEisley writes: Like hypochondria, cyberchondria is simply a more elegant way of saying "it's all in your head" — only in this case the people self-diagnosing are using tenuous data gleaned from the Internet and our ever-connected gadgets to support their hypotheses. Virtually everyone who has put the Microsoft Band through its paces has come away with the claim that its heart rate monitor is simply bad. ... The Moto 360’s heart rate monitor doesn’t fare much better, and in only the most perfect, motionless conditions will it provide anything close to an accurate reading. These are horribly inaccurate health tools, yet they are used as bullet points for would-be buyers to cling to. ... Even WebMD—the service that has given so many cyberchondriacs the fuel to continue guessing—has a note on every single one of its countless pages that states the site “does not provide medical advice, diagnosis or treatment.” And yet, that’s the one and only thing most people use WebMD for.

4 of 79 comments (clear)

  1. What other choice is there? by DNS-and-BIND · · Score: 5, Interesting

    Physicians don't do diagnoses like they used to. They look at you, consider your condition for all of 5 seconds, and prescribe whatever will get you out of their hair. They don't diagnose, they don't think, they don't care. When I had my condition a couple of years ago, one of the doctors actually asked me what tests I wanted to run. I was like, what the fuck, how the fuck should I know? But that's how it is. So what is there to do? Do your own research on the internet and become your own pathologist. :( And unfortunately there are tons of spammer optimized-for-google pages out there for every medical condition in the world. They all have a few paragraphs of useless copy and tons of ads inline. Go to a forum? It's all the same, pages of questions and few answers. So you have to spend tons of time learning about your symptoms from the ground up, and then try to guess what you might have, and then go ask a doctor for those tests. Good luck diagnosing yourself, because doctors don't do that shit any more.

    --
    Shutting down free speech with violence isn't fighting fascism. It IS fascism!
    1. Re:What other choice is there? by JaredOfEuropa · · Score: 4, Interesting

      That's my gf's experience as well. Unfortunately her symptoms are somewhat generic and fit a wide range of conditions (MS, Parkinsons, epilepsy, spinal issues, stroke, the list goes on) so self-diagnosis is pretty useless, and since these cover several medical specialisms, each physician so far has said "It's probably [something that's not his specialism]". The last one said it's probably psychological. Great. "Luckily" the other day she had an attack right there in the neurologist's office, who was so shocked that at least they agreed to run a series of tests to start excluding some possibilities.

      --
      If construction was anything like programming, an incorrectly fitted lock would bring down the entire building...
    2. Re:What other choice is there? by Charliemopps · · Score: 3, Interesting

      Physicians don't do diagnoses like they used to. They look at you, consider your condition for all of 5 seconds, and prescribe whatever will get you out of their hair. They don't diagnose, they don't think, they don't care. When I had my condition a couple of years ago, one of the doctors actually asked me what tests I wanted to run. I was like, what the fuck, how the fuck should I know? But that's how it is. So what is there to do? Do your own research on the internet and become your own pathologist. :( And unfortunately there are tons of spammer optimized-for-google pages out there for every medical condition in the world. They all have a few paragraphs of useless copy and tons of ads inline. Go to a forum? It's all the same, pages of questions and few answers. So you have to spend tons of time learning about your symptoms from the ground up, and then try to guess what you might have, and then go ask a doctor for those tests. Good luck diagnosing yourself, because doctors don't do that shit any more.

      You're right. It's because doctors have "Stats" now. Like they're DSL tech support reps. The HMO's got tired of the doctors ordering all that expensive "Treatment"

      Every time I go in I take in all my own literature, much to my doctors dismay who gets irritated and once even suggested that I had Hypochondria. I said, "Great, you finally made a diagnoses. Now treat me." Unsurprisingly he did not schedule a followup mental health appointment for me. When I got to the doctor I go well prepared like I'm about to file a lawsuit. You have to bully doctors into doing their jobs these days.

  2. Re:Self-diagnosis by Anonymous Coward · · Score: 5, Interesting

    You didn't mention the actual condition (apart from the joint hypermobility syndrome) but the fact that you said it is genetic defect affecting collagen makes me think the condition is Ehlers Danlos Syndrome.

    As someone who has been in a similar situation for all of my 26 years of life, and also managed to self diagnose after a lot of research, I can completely understand this. I too did not know that it wasn't normal to be in chronic pain all the time until a few years ago... the search for a reason began. It wasn't until my own research led me to joint hypermobility syndrome, and then onto Ehlers Danlos, that anyone even bothered to pay attention. Almost all of my joints bend backwards, my skin is super stretchy and I have many other related symptoms (that in and of themselves do not seem to point to something larger... until you connect the dots)

    I have sat in countless Drs offices and explained my symptoms, and been told it was all normal. It wasn't until about a year ago that I actually told a GP to google Ehlers Danlos and check off my symptoms against the lists described on various websites. Sure enough... he sent me to a specialist straight away, and, just like your wife, it turns out there actually was something wrong.... Ehlers Danlos Syndrome.

    Since then I have started exploring treatment options, some of which are helpful, others not so much. I also will probably be in the situation where I have to apply for disability while I try to stabilise my condition and get myself back on my feet and figure out my long term plan, but like your wife, atleast now I know what to do and what not to do.

    It is reassuring to know I am not the only one in this situation, and I am glad to hear of the positive outcome you have had when dealing with such horrible problems. I feel for your wife and the pain and suffering she has endured over the years but I am filled with hope that she is now coping with her condition and leading a much better life.

    Thank you for your post. After a day filled with specialist appointments (a few of which I had to explain my condition to) it is good to know that there is light at the end of the tunnel, and that you, like me, found self diagnosis to be useful in what is a very rare and obscure condition (that many Drs have not even heard of).

    All the best and thank you to you both, from another 'bendy' individual