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The Downside of Connected Healthcare: Cyberchondria
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.
My ex-wife had a serious, debilitating condition that saw her in chronic pain and sometimes housebound.
It was only when I met her and realised that there was something wrong that I asked her about it and she realised it WASN'T normal to be in constant pain, unable to walk. But there was more than that. The doctors had put her on painkillers, antidepressants, sleeping tablets, etc. to try to ease the symptoms but nobody had actually bothered to diagnose it.
And there were odd things. Her joints were in constant pain but, when she wasn't hurting, she was able to do karate moves that Jean Claude Van Damme would be jealous of. She had an extreme range of movement. And when she was in pain, things like her knees and elbows would GO BACKWARDS, making it even more painful to do anything and making her unable to walk.
We looked up the symptoms. The first batch of hits was Hypermobility Syndrome (now called Joint Hypermobility Syndrome). The list of things is gave as common side-effects and symptoms fit perfectly, as well as a number of things that until we read them we didn't think were related at all. It's a genetic defect in the way collagen is made, which gives so many odd and unrelated symptoms that it stands out by a mile.
We printed everything off, went to the doctor. He was astounded. He'd never heard of it. He'd never realised she had the range of symptoms available to match it even if he had. He sent her immediately to a consultant specialist. In two minutes, and a simple joint-range test, he said "Yes, you have hypermobility". Within a month, she was able to claim disability. Within a couple of years, she was managing the condition and had enough support to return back to work and live a pretty normal life (even teaches karate). Because now she KNOWS what she has, she knows what to do and what not to do, and has constant, background medication of the right kind to combat the pain. At one point, she was going to be put on morphine to stop the pain because they just didn't know what it was.
It was that easy. And it wouldn't have happened without a bit of Internet research. She'd suffered for nearly 30 years with it without any diagnosis (once she was told she might have arthritis - which is an extremely common misdiagnosis of hypermobility symptoms - but they excluded it because, well, she could move her joints more than anyone else!). And she'd had suffered at least several more if we hadn't bothered to check symptoms.
Doctors aren't perfect. Don't just assume they are stupid, though. But only you know your symptoms, only you have the time and effort and impetus to find out what you have (especially if you live in a country where doctors get paid by the test, fucking disgusting), and only you are the one who will benefit if you find out what you have.
The doctor was great, once he knew we were right. He was supportive and immediately helpful. He just didn't know about every condition on the planet. And although she has a diagnosis, there is no real prognosis - the condition never gets better, but at least you can manage it. The consultant basically diagnosed her and then that was it - there's nothing you can really do, medically, to "fix" it.
So don't be a hyperchondriac and think you have everything. But if you're certain something's wrong, and you find something that matches, see what the differentials are and see if you can't get it eliminated. At the very least, if your doctors note that you asked about it and they said it "couldn't be" that thing, then you have something to go and push in their face when they turn out to be wrong. But more likely, they will try to appease you that it's NOT that thing, run a few tests, and therefore get you closer to a real diagnosis.
Internet research isn't useless, if you have half a brain.
TFA is a naked propaganda from the medical profession
They made up a new term by attaching "cyber" to one of their existing term to denote the 'foolishness' of their patients
But on the other hand, the medical profession themselves never - and dare not to - tell the world how many patients they have killed, either due to mis-diagnose, or wrongly prescribe medicine to their patients
I won't mention any other case other than one that happened to my dear old dad --- he has high blood pressure and every single day he has to take medicine to put his blood pressure back into the 'normal' range
One time a doctor (not the same doctor, but another doctor) prescribed him another medicine (for what I forgot) and when he took that new medicine with his high blood pressure pills his blood pressure shot way up, to 200 over 160, or so
Alarmed at that all the other members my family were about to rush him to the hospital, I gathered up all his medicine and ran a check online
Long and behold, the new medication, as indicated by many online sites, can *NOT* be taken with the type of high blood pressure medicine that my dad was taking
I asked him to stop taking that new medication, and within 8 hours his blood pressure dropped back to his 'normal' range (by only taking his usual high blood pressure medicine)
Yet, the medical profession tried to imply that people like me who checked information online are 'cyber' whatever
I rather be 'cyber' whatever than put my blind trust on anyone, especially those who could - intentionally or not, - prescribe me medication that can burst my arteries and veins