Mixed Feelings

A little CFIDS street cred:  I've only left the house once this month.  It's been about two and a half months since I had to leave acupuncture school and come back to live with my parents.  I've been sick for about six years.  I'm writing that hoping that one day I can look back on it and shake my head and whistle. 

Since becoming bedridden, I've immersed myself in this strange community we have.  I've been reading a lot of blogs, personal stories, manifestos, and scientific research.  It's been good, and I wish I'd done it earlier, but it's also been hard to read the stories of people who are suffering so much.  I've been inspired by people struggling so bravely, and who are finding peace with their situation, but I've also been terrified when I read about people like me who are contemplating suicide or flailing in despair.  Not that flailing in despair isn't an okay thing to do sometimes!  But it's a little close to home.

Part of the reason that I didn't want to "join" this community is that I didn't want to identify as sick.  I've read Eli Clare and people who talk about disability as an identity group, but I wasn't convinced that something as negative as a disability makes a good basis for an "identity."  Also, who wants to identify as sick?  I want to define my life in terms of what I love, not what binds me.  Especially with this illness, who so many people discredit as being psychological, it becomes really important not to seem like you want to be sick.

But then...we are sick.  Magical thinking isn't going to change that.  And there are a lot of people out there who don't want to define their lives by their illness, at the same time that their lives are severely circumscribed by their illness.  Nothing I am thinking hasn't already been thought of by a LOT of ill people in the world, and hearing what they have to say about it has helped me. 

I also went through a sort-of revelation after reading an extremely intelligent critique of the way CFIDS is portrayed by media and both the mainstream and alternative medical establishment, in Peggy Munson's (see my rave about her in my last blog post) Stricken.  And here it is: I have been buying a lot of bullshit!  It's not my fault that I'm sick!  It seems like a pretty straightforward assertion, but I still blamed myself until fairly recently, until reading what other sick people have written about it.  Hippie doctors saying that we can always heal ourselves, and the complementary notion that our inability to heal ourselves is a spiritual deficit, that CFIDS is a metaphor and entirely within our control...that's bullshit!  Duh!  Thanks, everyone! 

So it's been good, reading all this. I'm going to keep doing it. We're a community whether we like it or not.  Though maybe on the really bad days I should limit my intake of other people's suffering.