Fibromyalgia Action UK
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People have no idea! So angry

A woman I know, that I have known for about 8 years has totally blown me away,

On Facebook people were discussing the changes in DLA and all the rubbish along with it, when this so called "friend" turns round and says the special olympics has ruined 90% of DLA claims. I asked why? She said that the olympics proved no matter what you have wrong with you there is a job out there. I said excuse me! you are putting every disability into one catagory. She said, oh get over it Tre you are only questioning me cos you feel picked on!!!!!!!! I was furious, I said you have no idea K***. I wish I had only lost a limb, I might be able to cope better than I do now. SHe turned round and said I should spend some time with an amputee to see what they have to put up with, phantom pain in the missing limb! I just sat and sobbed, I thought she knew what I went through.........I am so angry, What hope to we have,,,,,,honestly.

27 Replies

Oh love, you sound like you have really been through the mill. Just read your statement about yourself. You must be a strong person, your still fighting to get on with your life. You dont know how strong you are. I dont think we see the good in ourselves as much as the people around us do. By gum lady, you sound like you need a break, and the first thing i would suggest is to weedle the negative people out of your life for starters.

If your friend has said this to you then personally i wouldnt class her as a friend, maybe more of an aquaintance.. Lets just say "she very much sounds to me the kind of person whom has not yet suffered any ill health, but it comes to us all eventually, even old age presents challenges of its own kind, and old age is something that we will all sucome to.

Dont let this have any effect on your state of mind, People like that come and go, no dought you wont play on her mind so dont give her the satisfaction of being on your mind. You sound like a very caring person, This is one quality she obviousley does not have. On the other hand everyone is entitled to their own opinion, this is her opinion and so be it. That doesnt mean everyone else feels the same. What may challenge us may not challenge the next person. Maybe the amputees have barriers that we dont, no one knows what goes on in other peoples heads.

Your condition effects you totally different to other peoples conditions. I have fibro and ME, my fibro may cause my hands to feels like they have been trapped in a car door, lol. Your fibro may have different symptoms. What I cant do maybe you can and visa versa. Knock her off your friends list. write yourself a list of all the good things you have achieved, and all the good people you have in your life, 5 children, grandchildren and a loving husband is a good place to start.

When you look at this list you will see you have a solid base to build on. ((((Big Hugs)))

Hope you feel more possitive soon xxxx



so sorry this ignorant woman has upset you

my oldest brother is a paraplegic but still managed to go to uni and is now a proffessor and all done after his accident , but we all cope in different ways and he doesn't see himself as disabled just says " i do things differently " but then we do have the stubborn streak that runs thro our family. He does not however under estimate my daily struggles and is very helpful

i am not sure anyone can truly understand unless they have these illnesses we have but some don't even try

i agree that maybe its time for a clearout on your fb list , i recently did it and only have best friends and my cousins , there are lots of cousins lol

i hope you feel happier when you wake up tomorrow hun

take care xx


Dont get angry, she is not worth it. This will only aggravate your fibro, we are all individuals and all suffer in our own ways. She will probably never understand, I have friends who admittedly dont understand the illness but never voice anything like she has. At least my friends respect what I can and cant do, or accept the way I do things and last minute changes sometimes too. I have had Fibro for over 10 years now and was extrememly bad in the beginning, but have been lucky and this has improved so a wheelchair is not required now. There are times when I feel really horrible and sorry for myself, but I pick myself up and carry on. Life is different but have accepted it to a certain extent, I do what I can and leave what I cant. Who knows how the new DLA change will affect me, but Ill worry and sort it out when it does, no point fretting about it before it happens, will just make me ill. Good luck hun


This person missed the important point that many amputees, and indeed most Paralympic athletes, tho' they have to do things a different way, are not actually ill!

That's what makes the difference.

There are a lot of 'differently abled' people out there who are tremendously fit despite having a missing body part, whilst there are also many, I'm sure who are sick, miserable, and unable to work.

I don't know why you are bothered by such ignorance, though I understand your distress! Pick yourself up, dust yourself off, and remember that it's your business and no one else's - and they can just keep their sticky noses out!

Love Moffyx


Nice reply, I agree with you 100%



Morning goes to show people have no idea what Chronic Pain is like and I would not wish it on them. My dad was a double amputee Brave man bless him. His pain was not constant but intermitant. I shall say no more I get cross .

Chrons pain is not comparable except to mental illness perhaps. So please ignore your "friend" sometimies it is much easier to let them have their ideas !

So where are we well make a cuppa take a breadth of air we are here we will survive we are perhaps some of the strongest people I have ever talked to. If in pain take the strain, there is something we can gain - from simply smiling with disdain. xxgins


Ask her how she would cope if she got flu. ......


Ultimate statement- de-friend her


I have thought this over and have to add my bit... I do find that when the term ...getting the disabled back to work... is used its a far too wide term.. There are so many types of disabilties.

some cause pain constantly, some cause intermittent pain some cause none or very little. For some its physical, for some its mental, for some its both and this is where the problem lies and confusion occurs. In my local library there has been for the last 10 years the most lovely lady who couldn't be more helpful , she has cerebral palsy, she walks and talks a little differently ..but she is happy confident and great at her job. this is what so many people who dont live in our and others shoes realise ....disabilty cannot be shoved into one box and treated the same. So nanatre deep breath and then politely ignore comments from people and friends who are lucky to have their health and don't understand, WE are not alone.. Unfortunately neither are they.... But we live in hope it changes

Hugs VG x


Good Morning.

Sorry to hear your distress at your so called friends comment, but they just can't seem to grasp how this illness affects us. I always say, how do you feel when you have a bad case of the flu' and then when they answer I say times that by 10, every day.


Ask her what events she plans to take part in, in the next Olympics. I question whether some of the paralympians were in the right place. I feel a disabled hand in a bike race gives unfair advantage over someone with say a disabled foot. As VG says, there are many categories for disability. As my disabled husband says......'I wouldn't have run a marathon or scaled Everest before I became disabled, so I am not going to do it now'! Go spend your spoons with someone who understands.


actually there were different categories in the paralympic events and in other games or people with varying degrees of disabilities.


or = for


Hi, I get really worked up about people's ignorance, last wk I was on my way home after a hospital appointment, I wanted to stop at a shop on the way home to get some bread, I chose a shop that had 4 disabled spaces very close to the door, the spaces were all full even the normal spaces so I decided to wait by the disabled spaces for one to come up.

I was sitting there in a dolly daydream when all of a sudden there was this hammering on my window, I opened the passenger window and he was really going at it with lots of naughty swear words :) then he saw my crutch on the passenger seat and launched into the :- your the problem with the this country, you drained all public funds, I've paid my taxes for you to sit on your backside whilst I'm out at work, you make me sick, I then drove off in tears.

My husband came home and said when things like these happen look at the person and say out loud "it's not what they think of you think of them that counts". It's so true and has helped, I hope this may help a little . Gentle hugs Judith


I missed on my hubby's saying and it was meant to say, it's not what they think of you that matters, it's what you think of them that matters !!!!


I once parked in a general space at the supermarket as all the disabled spaces were full.

an irate woman hammerred on my window shouting that there spaces for people like me,

these spaces were for normal people!


So sad to hear the Igronce of people !! I think Facebook can cause too much trouble !!!!

Wouldn't it be nice if we could give our pain away for a day !! You could give it to her and sit back and listen to her scream and cry because there's no way she realises how much pain your in !!! My sister used to ask me most days am I going somewhere nice ???? She thought that because I'm not working I'm havering the time of my life !!! Out shopping and lunch out all the time !!! Not only am I too broke to shop all the time but even if I were rich I'm in too much pain !!! Some days I can't bend down to pick up money from the floor !!! If I manage to go shopping I drop things all the time and my husband behind picking everything up !!!! Next time you speak to that so called friend tell her if pain was the colour blue you would be the big smurf in the room !!!!!!!!! If it were blue everybody would have sympathy for us !!! Ha ha !!, imagine what we'd look like !!!!

Sorry gone off the track !!! Just whatche'd advert on tv for nurofen !!!! I'm tamping mad !!! Have you herd that woman saying My life is too high for pain !!!! I live life past pain !!!!! Or something like that !! No wonder people don't take us seriously !!!!!! According to that advert all we need to cue our pain is a bxxxxy nurofen !!!!!!! Why didn't we think of that ?????

So between that and the other advert for a gel ,voltarol !!!! It isn't surprising why we are treated so badly !!!!

Hope at least this helps and your not too upset !!! You are not alone , take care x



You call this person a friend, if they truely had any understanding of the words pain, suffering and constant discomfort then all I can say is well behold them if they ever get sick or ill with a chronic condition - they are no friend. Maybe you should feel a bit sorry for them - cant have much of a life to make cruel nasty comments like that...........

We are always here for each other - that is my definition of a friend.

Take care.



If a friend did that to me on a public domain like that, or to my face, they would no longer be a friend. The way I look at is this. It is not what is wrong with a person, it is how it affects them. For someone missing a limb they may have all the get up and go that we do not seem to have. We are then made to look like shirkers, and this word has recently been used in parliament and we are not. Someone with a disability may not suffer chronic fatigue the way we do. And often we don't just have fibro but we have other ongoing illnesses as well. If she cannot take the time to tell the difference then she is not worth worrying about. Forget her and trust in those that really do understand what you are going through hunni xxxxx


All I can say is , your friend has not really thought about what she has said, maybes sheil think on later about it, FIbro is a condition that makes people ill in different ways. We not athletes with a missing hand and can run around a trackpad thro a javelin or jump over hurdles . Ect ,,, or even play wheelchair netball , think you get my meaning, rekon your friend missed the point completely. , Dnt worry about it .. I get it the same ,, my friends havnt all been educated yet and dont know what fibro is,, x


Hi nanatre, so sorry your so called freind is so ignorant & has upset you, the stress is the last thing you need. I wonder if there is a way you can like fibromyalgia on your fb so that she can see & read what fibro is about?

Take care, stay warm & the fibro family are here for you xx.


I feel awful for saying that about amputees. I know they dont have it easy either, I just think if that was all I had to contend with it would be easier than coping with FM....I never meant to upset anyone.

She is no longer a friend of mine. I cannot afford to have someone like that in my life.

I just thank goodness I have found this site.....we all know how we feel.

Thank you so much, you are all such wonderful lovely people.


Gentle hugs xxx


Hi Nanatre I have read most of the comments and firmly agree,don't let her win by making you worse not even for a minute.

I have found out who my friends are and at first it made me sad then I thought....hang on I don't need friends like that!

I got a scooter,and paid for a chair lift myself because funding was 6/8 months to get and I could not get up stairs. I also have sticks and of late a stroller for in doors because I was causing my OH problems by relying on him to lean on.

When I was talking to one of my "friends" ( yesterday first time she had called since nov; last year ) she said Oh I am glad you are out and galavanting about! I told her NO I am in and can't drive or go anywhere....she says she has Fibro etc and I am lucky as I have DLA and My pension...and she has none so has to work. I see pics of her on FB dancing in clubs and pubs...yet she cries about all her pain,and the fact it is far worse than mine!

I said "friend" because that is how she see's herself ,but I do not actually have any friends left as since becoming so ill this last few months the ones I thought I had,have vanished, or phone now and again and speak to my OH to see how I am. Er never knew this illness was so infectious. Some of them say "Oh tell her I will pop round when she is better,or maybe meet up sometime for a coffee, but only when she is better "

All I can say is on this forham I have chatted to lots of people and I appreciate being spoken too with sencerity,and understanding from strangers I have never met x x

I am sending you lots of Rainbow hugs x ((((((((((((((((((((((((((((((((((( ;-) ))))))))))))))))))))))))))))))

Take care and don't let this woman upset you any more it really is not worth it. and at least now you know her real value.................. x x x


I am actually quite reluctant to discuss my illness with anyone now, friends and family included they simply don't understand so why bother using much needed energy even trying to explain it! don't get me wrong My mum,daughter and sisters are wonderful oh and my G/P but as for the rest of society.........forget it! i know it seems a very negative attitude to take but that's how i feel at present due to the most horrendous mess this country seems to be in right now,eurgh sorry! x


As you say amputees come with their own set of issues. My husband forgot he no longer had his left leg and went to put it down to save himself when he fell off the bed! Caused endless giggles. Enjoy the picture! :))


Oh my god, I;m shocked at soem of these coments. Some of the people on here have been in some awful positions, especially the one's with people nocking on their car window abusing them!!!!

I think if that happend to me I would get out my car and give em a smack in the gob lol, I knowits not very nice but jesus christ There is no way I could let someone say cruel things like that... I may walk slow, and look timid but by god ive still got the fighting spirit in me, My father ingrained it into me as a child, You back away from no one, they shout... "you shout louder" They hit you "you hit them back harder"

I wouldnt advise it though, its not the way to act.. If i had chance to think i would just make them look like an idiot with words... but theres no way i could sit in my car and take that abuse... some very nasty people in this world unfortunatly


sorry my spelling is bad today, fibro fog and painful hands!!


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