"FIBRO-MISUNDERSTOOD"
I was hurt to the core by a comment from a friend regarding my
FMS/CFIDS disabilities - she advised me to try harder and trust God
more. I am already stretched to the breaking
point.
I have been in tears for the past few days, stunned by my friend's lack of
understanding - trying to get over it, excuse it, and pray it away.
I know that many of us with FMS/CFIDS endure misunderstandings from family and
friends. Our suffering is often not validated, and we sometimes hear
comments like--
"You don't LOOK
sick."
"Just take the pill they advertise on TV for it."
[The pills don't work and have side effects more terrible than the
illness.]
"Trust God more." [How do you think we get
from day to day?]
"It's all in your head." [What a put down -
but technically true - the brain is broken!]
"You
need to try harder." [A proven way to make this condition
worse.]
"I
saw you laughing the other day - you must feel great." [If we
showed how bad we felt, no one would want to be around
us.]
==============================
If I didn't have
this illness myself, I might even be saying those awful things to people!
(Horrors!!) So I don't blame others for not understanding an
invisible illness. To prove my point, years ago I sprained
my neck and had to wear a cervical collar for 2 weeks. I got more sympathy
for that minor injury than I ever got for FMS/CFIDS (onset 1982) - which
was 1,000 times worse. People ARE sympathetic if they can SEE something is
wrong - even strangers at Wal-Mart offered to help carry groceries,
etc.
I would
describe FMS/CFIDS with these words: wretched, devastating,
complex, invisible, life-wrecking, unpredictable, all-pervasive,
frustrating, incurable www.fms-help.com/signs.htm.
Many sufferers take their own lives - some even visit Dr. Kervorkian
(Tip: Don't do this!) The emotional pain of being
misunderstood greatly adds to the weight of suffering. Many people
with FMS/CFIDS go on disability because they can't function www.fms-help.com/disability.htm.
I thank God for my
husband, Donnie. He understands my illness (because he sees what I am
like at home on good days - functional - and bad days - trashed), he is
sympathetic, and tries to protect me from myself (overwork) and from others
(judgmental comments). He has done so much in educating his family
about FMS/CFIDS. I am also thankful for my brother (Ph.D.
physics) and wife (Ph.D. virologist) who understand, and also for many
friends who "get it."
Well, thanks for
listening. I'm just blowing off steam! HANG IN THERE AND DON'T
LET THE NAY-SAYERS GET YOU DOWN! THEY DON'T WALK IN YOUR
SHOES! Even the righteous man, Job, in the Old Testament called his
closest friends "miserable comforters" during his time of
suffering. A
list of things that help me be as functional as possible is at www.fms-help.com/what.htm.
I also have 100 Tips for Coping with Fibromyalgia and Insomnia at
www.fms-help.com/tips.htm.
Your fibro friend,
Dominie
P.S. Update: What happened
between my friend and me has had a happy
ending! She later apologized profusely, having felt
convicted by what she said. I explained to her with tears about my
difficulties with this illness, and I know now that she understands. Our
friendship was about to break, but has actually become stronger
through this painful experience. Here's something short you can share with
people who do not understand FMS/CFIDS/ME - www.fms-help.com/ME.htm. I
shared it with my friend, and I think it helps her understand the battle I
fight every day - at least a bit more.
100 Tips for Coping with Fibromyalgia &
Insomnia
My Fibromyalgia
Story
My Chronic
Fatigue Story
My Insomnia
Story
What I Use
II Corinthians
1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue
Syndrome sufferers and their families.
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