(Notes: My tech setup is much nicer than this; I am totally afraid of guns (and also clay-mation); I don't really look anything like Tina Turner.)
I am thirty, I have CF, I am post-tx after 5 surgeries, I almost died 3 times last year (literally), and I have never considered myself a “sufferer” or said, “I suffer from Cystic Fibrosis.”
I don’t really know any adults who would define themselves as “suffering” from CF, even when the s. is going down.
Lately, there has been a CFBloggy focus on phrases we hate in this field, which have included, “Clean out,” “I’m sorry,” (i.e. no one cares if you’re sorry if you do something that hurts my kid and I find out its because of your incompetence or fear of your superiors,) as well as several moms of tiny CFers and skinny CF ladies hear all the frackin’ time. Yesterday my BlogHomie aka “ CFFatBoy ” wrote a great article that you can find here: http://cffatboy.com .
Here was my response:
<<Today I read an article that said the typical "so and so suffers from CF," and I was like, "why is it always 'SUFFERS'?"- even when the article is about how someone is kickin’ butt? Can these wordsmithes* really not think of a way to write an article that raises awareness/prompts donation without defining a teenager in an article who is on a sport, in the arts, doing treatment (sound familiar?) as a SUFFERER? Why not highlight all s/he does and congratulate him/her for being wise beyond their years, and committing to health EVEN IF there are ups and downs in a this progressive illness?!
Grr. I love your soap boxes. I always try to climb up and join. >>
*the term wordsmithe is used very broadly. Not everyone can be the true wordsmithe that KRooney is.
Heh, I'll be 32 in 37 days and I've also never called myself a sufferer. I've wanted my suffering to go away, but it has never once been a label I've used for myself or allowed anyone to use about me. Thankfully, no one has used it in my presence - else I'd have to go ape **** on them.
ReplyDeleteI left a really long comment for Amy yesterday to ignore those morons who are watching her feed Jackson bacon and such but it got eaten into oblivion. Perhaps I'll re-write it this morning before I start working, even though I'm late meeting my goal already.
<3
ReplyDeleteI hate they say suffer too. Not everyone "suffers" from it. I always say I LIVE with CF. Because that's what you are doing. Living WITH it. Not suffering along each and every day (well some are but you know what I mean). :)
ReplyDeletegrr...just posted comment and it, too was lost. abridged version:
ReplyDelete@J- I am doing a follow up to that discussion called Birth Control, Boobs, and Why I'm Glad I'm Skinny, Cuz Otherwise I'd Be Really Fat
@K- Just trying to confirm my place on future Jeopardy rounds regarding you. Who is Beth Peters?
@A- see you in an hour!!! I wrote an eloquent-ass comment (yes I see the irony there) and it is gone, now, forever!