Saturday, January 22, 2011

X-treme denial: Will they hear our whisper?

"honestly, cancer patients get world class care. Everything is taken care of for them, from financial issues, to emotional coping to driving to and from treatment and appointments, from as far as Hope, by volunteer drivers. You get all the treatments that you need and if you want to be treated till you die, so be it, our very generous health care system will pay for the very expensive drugs."
* * *
I've said it before, and I'll say it again -- although I know a number of people who've been cured of cancer (my father among them), I know no one cured of CFS.  (Mary Schweitzer does exceptionally well on Ampligen, but it's not a "cure" -- when she goes off it, she relapses.)  Yet people still act like cancer is an automatic death sentence and CFS/ME is a piece of cake to deal with.  Cancer patients, even those with a 90% chance of survival, get oodles of sympathy; CFS patients get insults.
It's got to stop.  We must be taken as seriously as the severity of our symptoms, and not told "it could be worse, you could have cancer."  No, it could be BETTER, I could have cancer -- a quick surgery, a few weeks of chemo, and life goes on; unlike CFS, where life never returns to normal.  Even during my 12-year remission, I was not "normal"; I had to rest more and do less than I had before I got sick. 

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