Who gets frustrated angry with the way people misunderstand the invisable illness?

[lynr]

Who gets angry when people think you are too lazy to work as fibro is an invisable illness.People ask where i work etc and if I try and explain that fibro is l chronic fatquie with severe pain ..... people just turn around and say oh I get tired too...... ahhhhhhhhhhhhhhhh !!!!!!!!

[Spirit]

Total sympathy. I get flares of acute pain on top of the usual suspects and at a 3 day course was limping heavily from my left foot hurting on the saturday. Sunday morning is now the outside of my right thigh hurting and limp is other way. VERY cruel person comes up and says "just a word to the wise - if you want genuine sympathy you might want to try limping on the same leg...." If I'd had the energy I'd have kicked him.

[lynr]

So sorry to hear this some people have no idea and are just down right rude, we don't want sympathy , just understanding , all the best wishes sent to you xx

[dweezer]

People are generally nasty and cruel. At the end of the day we should be focussing on those that understand or willing to try at least, and to realise some people are just born nasty. This is a terrible illness and if you don't live with it every day it is almost impossible to understand too. Lets face it, would we really be so sympathetic all the time, the list of ailments are too long to even mention, which is why medics do avoid it. I used to get really upset bu peoples remarks, even got pushed by a guy in a shop being accused of being drunk,idiot. Anyway, the best thing to do is to make the most of what you have got and focus on yourself and family and friends that are prepared to support you, hard as it may be. Shame my mother has no understanding though... My eldest daughter has fibro and possible my younger daughter now. No support from anywhere can be a little depressing but things can change, so try and stay positive I say and try to ignore those people that obviously will never have an understanding of anything outside their own realm.

[Artyrosie]

Under this government there seems to be a campaign to vilify benefit claimants of all kinds, but particularly those who are ill but don't seem to be. What I want to challenge is the idea that we are all fraudsters when the governments own figures clearly show that the number of fraudulent claims is only about 1% .... and I'm happy to say this to anyone who dares to challenge me.

[fibrojude]

I feel let down too! , i have a permit to use school car park as somedays im late due to chronic fatigue and fm Im 52 had 5 children last one at 46 was fit n well till i had a whiplash from a guy hitting my car whilst stationary mums say how come you allowed in here to park! others in car park have invalid children with zimmer frames no one questions that who would dare! but cos my face may look ok some days they dont get it when im in flare they say aw you look rough you ok ? and one day i couldnt move my legs they were like lead teacher had to bring my little girl out , the faces, wanted to hide , cried when i got home in my room

[Mdaisy]

This is a subject that most sufferers are only to aware of because of their bad experiences.... It is disgusting in this day and age that there are still individuals who stigmatise and discriminate against people with invisible illnesses.

I have read somewhere that they are making progress in showing evidence of pain response in the brain function that is significantly different from those who are healthy individuals. The fMRI (functional MRI imaging) results are still being researched but the initial findings shows FMS response to pain to be higher and explains are sensitivity to pain.

I hope that in a few years they can prove it with this diagnostic test and the DR's will have to take note and admit the failings over the past years of denial or saying its all psychosomatic. Changing Drs may help at the time but not a long time solution. This fMRI will hopefully provide the awareness and understanding needed for the Drs & general public to change people's perceptions. We live in hope

Needless to say we should not need physical evidence of a test result for clinicians to trust in what a patient says as Margo McCaffery states in 1968: "Pain is whatever the experiencing person says it is, existing whenever he says it does" and health professionals should remember this.

Until then it is us the sufferers to stick together to promote awareness and keep fighting positively for change.

Fibro hugs