I have an autoimmune disease (ITP). I will always have an autoimmune disese. Such things are genetic. I have accepted this, and realize how lucky I am that one simple blood test was all I needed for diagnosis.
Others are not so fortunate. People with Lupus and Fibro (among many others) will probably go through tens of doctors and hundreds of tests before entering The Land of Diagnosis. These people are understandably scared and upset, especially if the ultimate diagnosis is Lupus or CFIDS or something else that no one really knows how to treat because no one knows what’s going on with it. To a snake oil salesman, this is known as An Easy Target.
Snake Oil comes in many forms in our modern world. There’s the traditional “take this pill and it will cure you omg!” crowd that advertises on late night television. These people are more invested in the weight-loss market, although they are making inroads into autoimmunity. But what I see more of and am angrier at are the crunchy new age snake oil salespeople.
These people go around saying “take this authentic Chinese/Indian/Mayan/Egyptian root/herb/essential oil/bat shit and it will cure you!” They hide behind things like ayurveda and claim that a “simple” diet change and/or detox (whatever the fuck that means) will completely alter a person’s genetics and make the disease go away. You have to balance your humours, see.
A lot of these people don’t even know what the hell they’re talking about (big surprise, no?) and when challenged, claim that your “negative thinking” is what’s causing your disease. (Really? I’d like to see the positive thought that could cure me.) They don’t understand remission, they don’t understand simple genetics, and they hide behind Sanskrit or other Asian terms to pretend that they have The Answers. They use people’s frustration with modern medicine to claim that doctors don’t know what they’re doing and will only prolong your illness to make more money whereas a “natural” approach will heal you lickety-split. They also make sure that they claim they can only cure diseases that can’t be easily diagnosed. And they fucking piss me off. I cannot stand people who take advantage like that. Especially when they claim that “they only want to help people” “I’m not making any profit on this” or “I know people who were cured of X by doing this.” I know people who think a lot of crazy crap. Doesn’t mean they’re right.
Now, I’m fairly crunchy and new-age. I treat my ITP both scientifically, by going to the doctor and getting regular blood tests, and alternatively, through meditation and yoga. I firmly believe in a holistic treatment plan for chronic illnesses. But I hate hate HATE people who say that their particular brand of quackery is the One True Way to a cure. I’ve seen too many dying children when I was getting treatment in the pediatric hospital to be comfortable with people proposing pseudomedicine to sick adults. And I wonder why, if I had to get ITP, I couldn’t have gotten the package that allows me to set fires with my mind.
(Yeah, this rant sucks, but this is the highly sanitized version composed after a good night’s sleep erased most of my rage.)
My grandmother, mother, and brother all have ITP, so I feel for you. Fortunately I got my dad’s blood, so I only have to worry about diabetes.
More to the point, my sister in law has acute progressive MS, and is subject to a neverending barrage of helpful suggestions to ‘cure’ it. Nobody has ripped her off with snake oil (she’s too smart for that) but we did get a chucke out of the guy at church who gave her all this literature on coffee enemas.
Went to a holistic medicine symposium once. It was fun to listen to the Chinese Medicine guy go on and on about how dissimilar herbs are the way (treat fevers with cucumbers, for example), and then listen some other idiot go on and on about how similar herbs are how real holistic medicine works (treat fevers with chipotle peppers or some crap). My friends and I got in and got lunch for free and had a grand time passing notes to one another every time someone said something stupid. We were quite busy.
Naughty hijackk, but is this true? What about garbage disposals?
On topic: Do I use hot or cold coffee for the enima? French press, drip or a late? What about a nice Americano? Would that help me to press and starch my Chi? Do I do all of this when the moon is waxing? Should I face west and wear green or somethig? I need details!
Oh, I hear you. I have a number of health problems and my mother is constantly bringing me literature about all the crackpot cures. She’s so convinced it’s all true and modern medicine is blind to it out of greed. I don’t know why but she always believes these people are telling the truth. She’s so skeptical in other areas but in this she’s their dream customer.
I’m on a number of medications at present and she wants me to either stop taking my medications to try these herbal cures or take both together (yikes.) I say no, no, no, so she ends up just buying the stuff anyway and leaving it at my house. I feel so bad that she’s spending her money on this stuff. We argue about it, even. sigh
Argh. If I had three wishes, eliminating this idea from the world would probably be one of them. Don’t they know how fucking much unneccessary suffering they cause by telling people that it’s their own fault that they’re sick?
Fuck 'em with a porcupine, and tell them the pain is caused by their “negative thinking”.
Just from this snippet it sounds as if her mothering instincts are in overdrive and that’s the way she feels she can help or be useful to you, by searching out “new and wonderful cures”. I know my mom always hating feeling like she couldn’t help, so she’d sometimes go overboard into annoying attentiveness. Maybe you can give her some suggestions on others ways to help, instead of spending her money on dubious drugs. Of course you know your own mom best, just MHO from the description you gave.
My wife has CFIDS, and the relevant message boards she reads are full of ads and testimonials for quakery and fake cures. I am quite glad that she’s skeptical enough not to fall for the snake oil. Unfortunatly, as the OP stated it’s these diseases with no known cure and poorly understood causes that attract the most frauds.
And then there’s the non-fraudulent, well-meaning, yet useless advice. Her mom says to her, “Get outside and get some fresh air, you’ll feel better.” We spent a week in a cabin by the sea Vancouver Island for our honeymoon. She loved the scenery and fresh air, but wasn’t in any less pain there than at home.
So far the only thing that’s really helped her has been conventional medicine, although it did take a bit of trial and error to find the right combination of drugs.
rimshot