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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. Molly
    "Until this disease is a recognized medical and political illness, I have nothing to say."

    Julia, I meet 1:1 with my State Senator Thursday. If he should ask, I will follow your recommendation that I have a highly debated, unrecognized epidemic "medical and political illness" with extensive debilitating relapses that is only treated with palliative medical interventions.

    I agree, that staying away from "well mean"ing folks who have easy answers is the best route until those who should, would begin to care enough for their Patients and use the Gifts that God gave them to restore our lives. Until then my service can only be shared in small portions as the Will of God allows.
  2. Emmanuelle
    I love you all ... good posts!
  3. sleepy237
    I try to avoid healthy people as much as possible now. ;) I really am very grateful for our awesome ME/CFS community!! Thank God for all you all. :)

    Amen to that!
  4. alphahusky
    I do say I have a neuro-immune disease, too, come to think of it.
  5. Lesley
    With my daughter, I tell people about the orthostatic intolerance. That explains so many of her symptoms, and doesn't seem to be too much for people to comprehend.
  6. Julia Rachel
    I've not shared with any family members that I have CFIDS or that I am disabled. Nor have I shared this information with very many members of my social set. A few life long friends are aware as well as the CFS/ME/CFIDS sites I participate in. My son Blake has spoken of his illness rarely. Until this disease is a recognized medical and political illness, I have nothing to say. I have tried every tactic I can think of to explain at times, yet nothing has reached even an assemblance of remote compassion from those that are not afflicted. We live in secrecy, yet not for long. Advocacy is my next battle. http://vlgonvalcyte.wordpress.com/
  7. Victoria
    I try to avoid healthy people as much as possible now. ;) I really am very grateful for our awesome ME/CFS community!! Thank God for all you all. :)

    Teejkay,
    I'm with you. And I don't have ME. I just avoid anyone who suggests even slightly that they don't believe me, or take the time to try & understand.
  8. starryeyes
    I try to avoid healthy people as much as possible now. ;) I really am very grateful for our awesome ME/CFS community!! Thank God for all you all. :)
  9. dancer
    Great post. You capture the frustration of trying to convey this so well.
    Lately, I say "a chronic neuro-immune illness" and if they keep probing, I say, "sometimes called Chronic Fatigue Syndrome, but that's a terrible name for a disabling illness..."
  10. alphahusky
    Fibromyalgia. I've given up on ME and CFS, even though Fibro is hardly the primary thing for me.