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me or cfs...what do you say?

Blog entry posted by RestingInHim, Mar 30, 2010.

from a reply to tee...

God help me, i guess im just too concerned about what people think who dont really know me when one of the first things they learn is that i have what im afraid they may think is chronic laziness!! myalgic encephalomyelitis sounds so much more like a real, scientific, though mysterious, illness...on this side of the pond, at least.

you know, as in a casual conversation such as:
why did you retire?
because of a prolonged flare-up of a chronic illness
im sorry. may i ask what illness?
ME or myalgic encephalomyelitis
oh. ive never heard of it. what is is?
a disease which causes a neurological and immune dysfunction.
"oh. i will be praying for you."

versus:
why did you retire?
because of a prolonged flare-up of a chronic illness.
im sorry. may i ask what illness?
chronic fatigue syndrome
oh. um...i think my cousin has that. have you tried _____? it worked for her!
OR ...oh. i get really tired too
OR... oh. um. so...um...oh. i didnt know that. well, i gotta go now.

though im very grateful that my close friends and family seek to understand...and maybe because they do...im always taken off guard by those casual encounters. as evident on this forum, those on the other side of the pond have the same problem with the term ME. sigh!
  1. Carrigon
    I've tried telling people ME, but some of them already knew how alot of people in the UK still think it's mental, so that didn't work. Now, I just say advanced Lyme disease, which I also do have. They believe the Lyme disease, but alot of them still think it's a mild disease you can just get over. They always tell me how their brother's sister's nephew's cousin's uncle Jethro had it for two years and he's all better now. Seriously, you can't win either way. But anything is better than saying the dreaded fatigue word.