How do I get family, friends and coworkers to understand the pain, "brain fog", fatigue, headaches and on and on that I am dealing with???
My husband says there's nothing wrong with me.
A manager at work has been telling others that she feels I'm not being truthful, just trying to get out of work at the company's expense (I'm on partial disability).
My kids don't get why I have to ask for extra help with home maintenance.

I guess they'd accept my condition more if I walked around moaning, groaning and grimacing with pain. But- I won't do that. I'm trying to live my life as "normally" as possible.

How did you handle this? I would appreciate any help!

hi Deb,

Colinjn posted a link to this terrific, moving essay written by a woman with a chronic, invisible illness. You read it, and I think it will help you be able to explain to others .. or maybe they can read it too.

But You Don't Look Sick


Doreen

That article was so moving. I only wish I had read it sooner.

THat article has been a bit of a god-send to me. It's helped me to explain just what this does to a person.

Though - there are plenty of other who really just refuse to "get-it". And that Fibro is a very real, and very disabling illness.I"m afraid I'm building up a bit of a tough skin. I try to explain, but too many people just don't want to hear it - or think I"m just being flat-out lazy. I've really only recently come to the disappointing reality that I Will be dealing wiht this the rest of my life (after dealing wiht this for well nearly 20 years) - so I guess it's understandable that those who are unaffected don't "get-it".

On the other hand - I am alos encountering an astounding number of individuals who DO have Fibro - or know someone who does. They may not truly understand, but I find it heartening that this affliction that so many doctors treat as some kind of emotional crutch or hysteria (if they acknoweldge it at all!) is becoming MUCH more known. 2 years ago I couldn't find a soul who had any idea what it was - much less how badly it can affect life.

~Tracy

I am a newcomer to this site and I am so glad I found it. I have suffered 20 yrs of fibro with no-one to talk to who knows what I am feeling.

I wanted to bring your post to the top of the pile.. at least I hope thats what new posts do here.. as I too was very moved by the note on the site you posted what a great way to explain our dilemma.

The medical site is terrific for diagnosing/explaining conditions too so I have bookmarked it.

Despite being in agony for years I too soldiered on to the best of my ability refusing to give in to this illness. My mother was the only person who truly understood what I was going through and really helped me whenever she could and now bless her soul she too has been diagnosed with it and knows with first hand experience just how disabling this condition is.

Things can get depressing when you are in constant pain, its so good to know you can come here and be with like minded friends and support each other!

gentle hugs, sandi

I usually expain it that its like riding a surf board, that it takes a lot of effort to stay on top - mentally - but if I come off - the pain etc gets on top of me - and its real hard work getting back on top of that surf board - just to be in control.

Does this make sense or am I just waffling?!!

Hi Jems,

I think thats a great description.. your right we do have to have tremendous willpower to stay on top of the pain and not let it get the better of us otherwise we are sunk.

There is a wonderful message forum - the largest in the world, and you all really need to check it out. It has the lastest in everything+ real supportive folks on there.
If you go to this address you will find it.

http://immunesupport.com/chat/forums

They have a fibromyalgia + chronic fatique board + the message board is excellent!!

Thank you very much sunneywey, will check it out now.. we need all the support and information we can get!

God bless you. But I've run out of spoons for now. night. kuukuu