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Post by artistography on Sept 9, 2005 17:14:09 GMT 8
Many when you mention the 3 words CFS, almost shudder some with empathy, some with pure disbelief. As we try to keep ourselves focused and try not to be aggravated by remarks such as "oh I've been really tried lately maybe i have CFS", or " too much sleep will make you exhausted, try to exercise everyday". Where is the line drawn.
How do we protect ourselves from being a stigma?
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Post by Damien Tonkin on Sept 14, 2005 15:43:43 GMT 8
in my experiance it is better to tackle the community's missunderstanding of cfs on a large scale rather than trying to change the perceptions of one person at a time which will only lead to your exhaustion, to this end chrysalis members have participated in a number of interviews in print and on the radio and have personaly spoken to two state premiers and the queen of england, granted we haven't done any of that lately but once we get some more members who knows. It is however sometimes necessary to explain cfs to individuals such as friends teachers and especialy doctors don't try to do it all at once over, time they will come to understand that you have your limitations, also remember that myalgic encephalomyelitis sounds much more impressive than chronic fatigue syndrome. it is also important on occasion to get together with others who do or have suffered from cfs this will remind you that what you are going through is normal this is in my view the most important function of chrysalis.
I can atleast say that in the three years between when my sister got cfs and when I first got sick cfs was much more widely accepted thanks largly to her efforts.
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Post by artistography on Sept 14, 2005 19:01:17 GMT 8
i do agree that on a large scale, with the use of books, articsles, and using of corse the media, people will hopefully come to terms that this is an illness that must be addressed! i would like to however involve the media more, by more stories on sufferers, and their battles. There are so many who have made a significant difference, for us to come this far... i can't imagine what is might have been 20 years ago. Change is good, when it comes to education. Your sister made an incredible difference, i don't mean to pry. but may i ask a bit about her experience. I'm just interested how others cope.
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