"Still Stranded on the Yellow Brick Road... 3 Flats & a Blow-out!"
Part 1: Reprint and Updated of 1997's "Out of Gas on the Yellow Brick Road ©2004
By Carol Hope-Maier
Several years ago, I spent five weeks in a pain management program that claimed to eliminate the need for any prescription pain medication and return people to normal life. This program of behavioral modification included meditation, biofeedback, physical therapy, occupational therapy, group counseling, nutrition, stress reduction, hazards of prescription medication, etc. It probably sounds very familiar to many. After The Program, I was returned to my bed with permanent physical and emotional damage, only to receive a bill for more than $42,000 about two days later! No, I didn't pay the bill. A few months later, the bill was suddenly withdrawn without explanation and the $1,000 deposit demanded upon entry was reimbursed in full. While that served to validate my feelings, it was no consolation for the trauma.
I believe such programs are effective for some illnesses and injuries -- "some" being the key word here. Unfortunately, the practioners with whom I have personal knowledge and experience either fail to recognize or to admit this fact. (Giving them the benefit of the doubt, maybe they are ignorant of this -- but blinded by over-enthusiasm or arrogance?) Regardless, it is my humble opinion that this omission renders them truly dangerous. Unfortunately, it seems only we "traumatically initiated" know, and educating others about this is very difficult.
Whether by design or coincidence, these people have ideal "win-win" marketing programs since they remain totally without responsibility, accountability or blame -- that is deflected onto the patient. Their cleverly designed and irrefutable responses are bounced right in your face to shut you up. For example, when someone balks at the cost, they reply, "How much is your life worth?" Now I ask you, "What can you or your family possibly say to that?" And if their "product" fails, you: A. aren't trying hard enough; B. aren't doing it right; C. "WANT" to be sick. ("Why do you WANT to be sick?"); D. etc., etc.
Of course, with the exception of "C" which has been stated, most do not literally quote these accusations, but the message is clear and unmistakable. Most persons with CFIDS (PWCs) are now among the unemployable poor who cannot afford to waste hundreds or thousands of dollars on these treatments. But the real tragedy is the blow to the souls of the proud high-achievers who can no longer get out of bed unassisted.
I have yet to meet a single PWC who wouldn't try almost anything to get well. Our inherent pre-CFIDS drive makes us particularly susceptible to the crushing demoralization triggered by the criticism when our characteriscally zealous and meticulous compliance with their programs has failed to make us well.
Worse, during the sales pitch, the family has been assured that they can have their loved one "back like he or she used to be" --their loved one need only apply the principles set before him or her as (s)he travels the Yellow Brick Road. When our best efforts fail to regain our health, the devastating effects are compounded by cruel alienation from our families who were convinced that we had all the necessary tools to return to our former selves but chose the lifestyle of a slug. I should be amazed that there aren't more suicides among the PWC population -- but then again, it's further evidence of our indomitable spirit to which we tenciously cling even as our bodies and brains cease to function and "life as we knew it" evaporates before our eyes.
Culpabililty can even be dodged for the ultimate failure (suicide) when that is offered as confirmation of the initial assessment that the person was really deperssed or mentally or emotionally weak or defective all along ---anything but physically ill. "What a shame! Well, we did our best..."
I also find it interesting that so many of these "practioners" claim
knowledge of PWCs who are cured. My fellow support group members
and I have heard this claim many times, but none of us has met a
"cured PWC." Our requests to meet one continue to be ignored.
Again, let me stress that I believe many of these programs are
useful. They simply don't cure everybody of everything. The
problem lies with those who overstate the application of such
techniques, giving sufferers and their loved ones false
expectations. We must recognize that some of us run out of gas on
the Yellow Brick Road no matter how hard we try. I strongly believe
that these practioners have an obligation to be more realistic about
the results achieved by PWCs and stop blaming the victim!
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606