Saturday, June 6, 2009

A Lesson for CFS Patients

People hear what they want to hear, see what they want to see, and believe what they want to believe.
We've all run into doctors who think CFS is hypochondria and will not believe symptoms they don't see for themselves.  I've run into doctors who have also refused to see what is right in front of them.  Their belief system tells them that there is nothing to see and therefore, they convince themselves they see nothing. 
As an activist, I am always running into people who want to debate me because they "know" they're right.  The problem is, such people will not accept anything that doesn't fit in with what they already believe.
For one example, I had a lengthy debate with someone about the incidence of CFS and MS.  The number preferred by most CFS activists is 1,000,000 patients in the US.  I provided her with a source for that, as well as a source for the CDC's number of 4-7 million (which most activists think includes people with fatigue from other causes), take your pick which number you want to believe.  Then I provided her with a variety of sources for the number of MS patients, ranging from roughly 250,000 to 450,000 in the US.  While steadfastly refusing to provide me any evidence of a higher number, she continued to argue that I had to be lying, there could not possibly be more CFS patients than MS patients.  It didn't fit into her notion that the more patients you have, the more research money you get, and that CFS was a little-known disease because it only affects a handful of patients.  In fact, per-patient, CFS gets about $1 of research money each year, whereas MS gets $250.  Experts have said that CDC "doesn't want to find anything" and the best way to not find anything is to not spend any money looking for it!
For another example, I told someone that I didn't have time to look up the source of something I have committed to memory because I was busy -- I run a business and had to work.  That didn't fit in with her notion of what CFS is, and she said "just what I thought you'd say, that you're too tired".  I never said "tired", I said "busy working".  But in her mind, CFS people are too lazy to work, so she had to substitute the words she wanted to hear for what was actually said.  Fortunately, the entire exchange was online, and it was easy to prove what I really said. 
This is one reason I prefer to put things in writing -- it makes it harder for people to claim that I never told them, or I said something different, or I said what they wanted to hear. 
One of my doctors was proven to be lying when he claimed that I had diagnosed myself with CFS, but no doctor had ever given me that diagnosis, when I showed him, in his own file, a written report from a specialist a few months before my first appointment with him, which was delivered to his office a week before my first appointment, where the specialist confirmed my prior specialist diagnosis.  The same doctor also lied to SSDI that he knew I had psychiatric problems, but I refused to be seen by a psychiatrist, had never had a psych evaluation ... a few months after he was sent copies of TWO psych evaluations in which they didn't find the things he thought should be wrong with me.  At that point, it was no longer his word against mine, because there was proof of what other doctors had said, what I'd told him they said, where he chose to hear something I didn't say because what I did say wasn't what he wanted to hear.

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