In RCTN, Caryn writes: keep out of something you have no frame of reference for.
That's the best advice I've heard this week. If your only frame of reference for CFS is that "it has something to do with fatigue", then KEEP OUT OF IT.
There is far more to CFS than mere "fatigue". To tell a CFS patient "I'm tired, too" simply proves that you're unaware of the extent of the disability caused by CFS.
And then there are the people (both doctors and laypeople) who confuse "chronic fatigue" with CFS. Mark Twain said the difference between the right word and the almost-right word is like the difference between lightning and lightning bug, and the same is true here.
CFS is not "chronic fatigue". It's a Central Nervous System dysfunction with innumerable symptoms which are far more disabling than the fatigue. Many of these are observable symptoms -- not something you have to take the patient's word for. Fever is visible, so is vomiting, fainting, clumsiness....
Some doctors, who could not, or would not, acknowledge the difference between "fatigue" and CFS, perpetuated the hoax that the symptoms were all subjective and there was no proof of illness. Other doctors compiled lists of symptoms and tests that proved there was a problem. Some doctors perpetuated the hoax that "such a wide variety of unrelated symptoms, it has to be hypochondria." But neurologists proved that every one of the symptoms can be caused by Central Nervous System dysfunction.
People who don't know what they're talking about where post-viral CFS is concerned would do themselves a huge favor to stop talking and start listening. They might learn a few things about the disease instead of continuing to repeat false information.
1 comment:
Twain also said "it is better to remain silent and be thought a fool than to open your mouth and remove all doubt."
People who express opinions on diseases they haven't studied, or about people they've never met, remove all doubt.
And those who refuse to accept the character references of lifelong friends and observations of people who have seen first-hand the condition of the house (both before and after someone "cleaned" it), not only remove all doubt about being a fool, but prove themselves to be too stubborn to accept any facts that don't support their unfounded opinion.
Open your mind. Shut your mouth. You may learn that the person you've been listening to is a fraud and a liar. Nathalie's said it. I've said it. And still you choose to believe Seanette's self-serving lies instead of the truth.
The real problem here isn't Karen's DISability, it's Caryn's INability to believe anything good about Karen from any source.
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