Saturday, April 2, 2011

Time is running out

Pat Fero recently said to me:
        "I hope to create an understanding that
        whatever patients do to get someone's
        attention, although seemingly hostile
        and inappropriate, it is because we are
        3 generations in. CFS patients are the
        most patient people around"
 
And she's right.  We've been waiting since the 1980s for someone to take notice and get us the research to get us back to work, instead of just verbally abusing us as being too lazy to work, or crazy, or whatever other insults they want to hurl at us because they don't understand that the real problem is that we can't work.  We've tried and failed.  We've been fired because we can't keep up the pace.
 
Unlike AIDS patients, who very quickly organized ACT UP protests, we didn't.  We've been patient for over a quarter-century. 
 
It's been 20 years since Elaine DeFreitas discovered her virus and had her career ruined by the minions who didn't want to admit that their Saint Stephen of Straus might be wrong in asserting that we were all just depressed menopausal women.
 
We've watched "our" money squandered on research having nothing to do with CFS.  We've seen an audit demand repayment of that misused money to the CFS fund, whereupon it was misused a second time!
 
The average life expectancy of a CFS patient is 57 years.   Our first-generation activists, the Pat Feros and Mary Schweitzers, are older than that, already living on borrowed time.  I'm in my 50s and wondering how much time I have left: did that 12-year remission buy me any time?  Or am I enjoying a last hurrah before I wind up permanently in a nursing home, unable to take care of myself and just waiting to die?
 
We're running out of time and patience.  If the spectre of imminent death scares us into being "hostile and inappropriate", so be it.  Or is it simply seen as "hostile and inappropriate" because the powers that be aren't used to proper well-bred ladies having enough backbone to stand up and yell "we're mad as hell and not going to take it any more!"?  Because, let's face it, the first AIDS patients were mostly male, and the perception is that most CFS patients are female, so we're going to be held to a different standard.  We're not supposed to have balls, we're supposed to be quiet and ladylike and accept whatever the male patriarchal system deigns to throw our way.
 
We, the patients, are sick.  We can't do much in terms of organizing protests.  But what we can do is get this Damned Disease on the radar of female groups like NOW and National Women's Political Caucus and convince them to stand up for their dying sisters.  If you're a member of such an organization, write to them.  Post CFS info on their Facebook page.  Get their attention!
 
CFS/Fibro Awareness Day is May 12.  We still have time to get some big demonstrations organized with our healthy sisters taking the laboring oar.
 
 

1 comment:

thezenmonkey said...

Aggressively seeking help and pushing for awareness are both good and necessary. Posting ill-informed, scientifically and linguistically illiterate rants on medical blogs and elsewhere is not. I believe it's the latter that people are starting to take notice and disapprove of. A simple report of a study that didn't find XMRV is met with inarticulate howls of protest. This does us NO good and has netted CFS patients a bad reputation. If we reach out to others seeking awareness and action, we must treat them with the same respect we are demanding, even if everyone isn't in perfect agreement.