i have a toddler.. so using disable toilets isnt an issue at the moment as she's usually in tow if i need the toilet anyway, but on the bus if i have to stand- i usually grin and bear it... as the understanding just isnt there!! i agree there should be more awareness made for disabilities that look 'normal' on the outside...

As much as non believers annoy me , how do you accurately described our pain ? Even if you could verbalize it to anyone else they still couldn't get it. Unless you have it you'll never get it ! Think to yourself prior to becoming ill and your diagnosis , if someone told you they were in pain 24/7 and it was 365 days what would you have thought of that person ? To be honest I would've thought the person was a " nutcase" because who could live with that kind of pain and not be insane ? There are no visible cues to lead you to believe any of what they say , there's no limp, brace, crutches, machines of any type nothing more than that persons word ! Well now that I have it , I know who could live like that because I'm that nutcase ! So as much as it pisses me off , the otherside of that coin says " invisible disease !" That's the dilemma we live with ? There's no easy answer just playing " devils advocate for the non believers !"
Brenda

@A MyFibroTeam Member you're right... on the other side of the coin, it must be so hard to even comprehend this condition... my stepdad had fibro and i dont think i ever realised til i had it and RA how he must have felt... times when i've bussed over to my parents hose to help him put his shoes and socks on because he couldnt... watching him have a panic attack... i never realised how bad it was for him. there is no actual words to describe acurately what we all go through and to what extent... for us that live through we can understand alot of others pain and discomfort etc... those who dont.. cant... and we shouldnt blame them in all honesty, its just hard not sometimes

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A MyFibro...

First off education and understanding is needed. Secondly the doctors that treat fibro need to understand the undelying cause and listen to their patients. Lastly some kind of awareness event with literature and speakers to educate on their invisible illness.

It's pretty hard to convince people that you hurt enough to cause a disability. Most people think pain is transient and therefore you should be able to just wait a short period of time and it will go away. Chronic pain in itself is pretty hard for most folks to grasp so short of education and exceptance is the only answer.