Friday, April 15, 2011

Liar Liar, Pants On Fire - HAWMC #14

There is one thing that drives me insane where being a Health Activist is concerned...

In my day to day life, my family and friends know there are three things that I don't deal with well even on a good day... disrespect, whining and lying.

One of the toughest parts about being a Health Activist is addressing the lies that are so prevalent about certain health conditions, and health in general.  The biggest lie I want to talk about here is the CURE lie.

Sometimes there are no cures for a disease.  It is a fact of our life.  There may be treatments and there may be helpful things to do to live a good life despite a certain health condition, but that does NOT mean there is a cure.  Those people who prey on unsuspecting sick patients and their families by telling them they can cure their conditions should be ashamed of themselves...

Not everyone touting a cure knows that the information they're selling is complete hogwash - they really believe what they're saying is true, making the situation just that much more frustrating.

Sometimes they don't even know what the word cure actually means.   Here is a WEGO Health conversation that polls health leaders with the question, What does CURE mean to you?  What do you think of the word CURE?

So here is a quickie list of cures that don't exist:

++ There is no cure for Migraine disease.
++ There is no cure for cluster headaches
++ There is no cure for autoimmunity
++ There is no cure for Lupus
++ There is no cure for Sjogren's Syndrome
++ There is no cure for multiple sclerosis
++ There is no cure for Alzheimer's Disease
++ There is no cure for cancer
++ There is no cure for allergies
++ There is no cure for depression
++ There is no cure for ADHD
++ There is no cure for Dystonia
++ There is no cure for sickle cell disease
++ There is no cure for HIV
++ There is no cure for fibromyalgia
++ There is no cure for type 1 diabetes
++ There is no cure for restless leg syndrome
++ There is no cure for autism

Did you notice anything about my list?  All these health conditions are groups here at WEGO Health.  In fact this list makes up the majority of health groups here at the site.   For nearly everything listed here there is someone on this site or another that has declared they know how to cure these problems.  Wipe them from the planet entirely and forever.  There are entire site available online that will teach you how to "cure" every disease you see here.

Don't get me wrong.  I believe that we will eventually find cures for the majority of these diseases and conditions.  We just haven't done it yet, and to tell a desperate patient that a cure exists is unconscienable.  It's wrong, wrong, wrong.

It is in part these people and these sites that make our physicians think and assume that every site online is bogus.  These people and these sites make it nearly impossible in some cases for an educated patient to go to their doctor and have a frank discussion with them re: their health care, because the doctor immediately assumes the patient is a kook who has visited a bogus site and is filled with misinformation.

How do you deal with these charlatans?  Do you engage them in conversation?  Do you debunk their myths as fallacy from the get-go?  Do you let them bury themselves first?

I tend to try to engage them in conversation because I feel that any conversation we can generate will benefit those patients looking for answers.  If they see the conversation hopefully they will realize that they are being misled by these folks, and how.  That said, it does irk me every time it happens.  It's difficult for me to converse with someone that is there just to profess their skill at a cure that doesn't exist.

Believe me, if there is a cure discovered for any one of the conditions listed above, I will be one of the first and the loudest to declare it from the rooftops.  Until then, hang in there folks... we're just not there yet.

This is my HAWMC entry #14.  I veered from it a bit in that I went far past the 5-10 lines and it's not a poem.  But I'm SO not a poet, and this is a prompt right?  Something to use to get you started on something you make your own?  :)

Comment by Alicia C. Staley on April 15, 2011 at 10:57am
AWESOME!  You are so right.  If I had a dime for every site that pushed the cure for cancer... I'd be retired now!  I tend to avoid these kinds of sites.  I don't engage these sites or companies pushing magic cancer cures.  Maybe I should - I like your idea of engaging them in conversation to allow others to see these exchanges and make their own decisions!  GREAT POST!!

I really feel we need to move beyond the "cure mindset" and focus more on containment or isolation of a disease.  The general public has bought into the "cure mindset" hook, line, and sinker and it's very hard to change, let alone shape, the conversations that need to take place in order to discuss realistic outcomes for any disease.

Great work Ellen!
Comment by JordanB on April 15, 2011 at 11:11am
For as long as there is civilization, there will be snake oil salesmen.
Comment by delordson on April 15, 2011 at 5:31pm
Great post! I've given up fighting some of the claims you see on some sites. Really scary.
Comment by Ellen S on April 17, 2011 at 9:03pm
delordson, I know it can be so frustrating to see all these claims, but if we - the patients - don't say something, who will?  I pray that unsuspecting patients will see these things and put the brakes on, but I also know from the experiences I've had in desperation, that there comes a point in time where a patient is willing to do just about anything and everything to get better.  Even money only becomes an object when the "cure" doesn't work. 

Yup, very scary...

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