"FIBRO-MISUNDERSTOOD"
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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
www.fms-help.com

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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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.