tough issue - but there IS a workable answer

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Posted by gary ( on January 02, 19100 at 19:52:54:

In Reply to: educating family members posted by Angela on January 02, 19100 at 14:58:18:

Hi Angela
(and others with the same problem)

You're talking about one of the absolutely classic problems for CH patients (and other maladies as well, such as alcoholism).

There's no mystery, but some pretty basic psych principles involved:

People have their own ideas that are so deeply ingrained culturally that to try to correct them is seen as an attack no matter HOW you try. That just makes things worse usually.

PLUS they are often actually scared, perhaps subconsciously -
IF something as horrible as CH ISN'T caused by some voluntary action of the patient, that means the observer might be a potential sufferer as well. To people who can't cope with the unknown comfortably ( most people I guess) that is too frightening to face SO they cope by asserting the malady is the patient's fault.

There IS actually a religious undetone to a lot of this as well. It comes from the ageold "sin & suffer God's wrath" dogma. Not very long ago, if people didn't have the knowledge to understand a malady, they got by that by saying it was God's punishment for some misdeed.
That's what al the business about evil spirits causing disease, demonic possession, etc is/was all about.

Even related to our own concerns in the CH "club".
One mainline CH drug is ergotamine, in different forms.
It is derived from a wheat fungus, ergot.
Ergot is a potent and potentially fatal hallucinogen.

There are cases fully documented in medieval Europe, of whole villages going on REAL bad trips with many deaths, which they blamed on demonic possession.
It was called St. Anthony's Fire, and they believed totally it was a punishment from God.
It occurred again, after WW2, in a french town, and it took many scientists a LONG time to figure it out -
They were getting communally overdosed from what we would now call "improper" handling, storage & processing of their bread grain.
Not until then - 100s of years after the establishment of belief in St. Anthony's Fire - did anybody have a clue what had been wrong way back when.
Can you imagine how far you would have gotten trying to tell those old superstitious peasants that it was their baquettes, and not God, that was rollin' them in the aisles ?
The parish priest would have had you barbequed for heresy.

This is NOT ancient history - I well remember older people when I was a kid, who would NOT use the word cancer, or mention diabetes or epilepsy under any circumstance. It came from this way of thinking.
Remember, a lot of behavior lingers LONG LONG after the reason for it completely disappears from people's consciousness. It becomes "traditional", and is then culturally protected as a sort of sociological endangered species.

Parents especially are sometimes VERY VERY hesitant about admitting their children have some sort of inherited or congenital defect -
they see it as a failure of themselves as parents, and it offends their ego, or stimulates guilt , or both.

So, if they deny it, and blame it on some external influence or the child's own behavior, they're off the hook.

The sad thing is that many wellmeaning, loving parents do this ALL the time, because it is such a fundamental (but negative and counterproductive)coping mechanism, and they just ASSUME they know more than their kids.


Don't hold your breath waiting for anybody to make the effort to learn and understand.
No matter WHO they are.
No matter WHY you think they should.

Simple - don't try & stop believing it's important what they think.

You can't change them, so change yourself.

Realize that it doesn't matter what other people
think of you.
what they think is THEIR business !!!

After all, whether anybody understands or not, is NOT going to change your personal case of CH.

If you're not dependant upon them for food & shelter & medical care, it simply doesn't matter.

If you are, then either find a way to be self-supporting OR just accept it that putting up with their screwy ideas is part of the cost of having them take care of you because:

It would be NICE to have everybody like us, and think we're the neatest thing since Mickey Mouse, ESPECIALLY people we have some emotional dependence upon -
BUT the ancient truth is that to be emotionally dependant on what other people think of us, is a sign of incomplete development of our own sense of self AND is emotionally immature.
That's not a BAD thing - just a sign we have work to do.
Don't take this as a personal slam ANYBODY, PLEASE !
It's nothing more than a rote restatement of pretty standard classic philosophy, constructive theology and the sort of things schoolteachers USED to teach kids, before "feeling good" took over from learning how to think, as the goal of child care.
Look up St. Thomas' famous prayer about it being better to understand than be understood.

Look up the full version of the "serenity prayer" by Reinhold Niebuhr
( NO - that ISN'T a trendy 12 step product, it was formally published in the 1920s, at least 10 years before AA was a gleam in Bill Wilson's eye, by a very progressive and positive-action, social gospel type protestant theologian.)

(see *** below)
I'm no saint - in fact I didn't get around to beginning to learn this stuff until I was in my 30s - about 15 years later than most people;
and I thought it was preachy bullshit when I first heard it.
Guess what though - it's true and it works.

And that's probably why it runs through all the classic literature and philosophy as far back as we have any record.

***I'm sure there are Hebrew and Muslim iterations as well, I'm just not familiar.
If anybody knows what they are - PLEASE email me.
I'd like to add them to my arsenal.

Remember -
the answer to a lot of these kind of problems is to get in touch with your inner child---------
and strangle the whiny little bastard !!!!!!

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