Very Upset :(

Well I`m at the end of my teather! Very upset, as someone who i would have caled my friend has told me that sometimes I`m ok but he said when its the `Annie is full of pain show` nobody likes or wants to be near me! When I am in real bad pain or its just there I never ever tell anyone, my real friends only have to look at my face to see things are bad, ie dark under my eyes, pale/grey. He has said if I start to do normal things then people will accept me!! I feel like I`m going mad and a fake and my life is one complete lie! I real dont want to live anymore, I have to wonderful Sons that I love dearly, but cant live with people talking and remarking of how my life should be and how I should live it. I never asked for this condition and would love my life as it used to be.

30 Replies

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  • Oh dear, I am so sorry to hear about your friend. It's not uncommon for people not to understand how we feel with our Fibro etc. They just haven't a clue have they. I must admit I had the same problem with a group of friends I used to have, they dropped me like a hot potato because when I first had Fibro I was really ill and had to cancel a couple of girly outings as I wasn't well enough. I tried to explain but the invitations stopped coming, they couldn't be bothered. Unfortunately this happens often. I decided to break free and leave them to it, it was the best thing to do. Now the people I know understand how I am, that I have good and bad days and that sometimes I have to cancel.

    Unfortunately sometimes we have to do this as it's just not the same as it used to be and it can get quite upsetting can't it. I hope you manage to sort things out with your friend, but if you can't, it might be better to move on. Hope this doesn't sound too drastic. Perhaps join a local support group so you can meet friends who understand how you feel because they feel the same. :)

    We would all love our lives to be how they used to be, I know I would. Sometimes in life we have to make changes, we don't always want to, but sometimes that's just the way it is. These changes can be for the better because we involve ourselves with people who really care about us. We have enough to contend with on a daily basis without being upset by people who are supposed to be our friends.

    You are amongst friends here, take care and I really hope you feel better soon. I hope it all works out for you.

  • Libbyde

    this is a beautiful response - caring helpful and wise- you are a very good communicator thank you from all of us x gins sadoldred - take heart their are lots of people who understand b positive x gins

  • Thank you so much Gins, you are very kind! :)

    I like to think we all care about each other here. Sometimes through a member's message, we can feel their pain, we know how they feel especially if we've been through it ourselves. There are so many good people out there who do understand, it's not worth wasting our precious time and energy on people who don't care or understand. :)

  • I am so sorry! What ever happened to 'a friend in need is a friend indeed.'

    I t does not sound like the words of a friend, but the words of a negative and spiteful person,

    You must feel very betrayed.

    Sometimes I think that people who react this way to you, are really a bit afraid in case it happens to them!

    Please don't feel alone, we are all here for you I am sure, so take care of yourself, best wishes, Cazx

  • I think that the person you are talking about is no friend of yopurs as a frien or family member would not treat you like that they would be tere for tou a;l the time i got 2 x very good friends but they are there for me if i need them to be if iwere tio call them early hours of the morning they would be there

    dontworry tooo much you have all of us on here and your family i think if it were me i would have a word with them and just say how much it upsets you when they say things like that and perhaps show them this page and let them read a few blogs so they can see how they have hurt you

    you take care love diddle xxxxx

  • This makes me sad i too have been through similar but dont let that friend make you put your feelings before your boys who need their mummy, easy to do i know but think of the wonderful work you do for them and sod everyone else again easier said than done ! i am onky learning now the hard way to be like that as true friends are there for you whatever unconditionally! They smile through the good times with you and hold your hand through the bad! i can count on one hand my true friends since getting fibro 5 years ago as have a 5 and 1 year old and was "left" to get on with it!

    Do youhave agood husband? Cherish them and forget the rest :) i will try and keep logging in as uner busy as seems so much support on here which is so comforting :)

    Big Hugs x

  • Omg sadoldred - feeling ur pain- sometimes the ignorance of others is simply breath taking. Im soooo sorry that this individual has given what he probably thinks is well meaning advice but which in reality has only served to wound & hurt you. I think everyone on here has at some time or other encountered well meaning but fair weather friends nd family who dole out the pull ur socks ups lecture (oh if only we could without pain lol) which they believe will stop us wallowing in our illness or exaggerating the impact of this cursed illness on our lives. I chose to think it is ignorance rather than spite or malice on their behalf; fibro is a much misunderstood condition & the fact that it is invisible ensures we are misjudged and looked upon as fakers, hyprochondriacs, moaners and even lazy buggers!! Only those who hav it kno the truth and while we learn to manage it were also tasked with coping with others misconceptions, unfair judgements and sheer ignorance!!! That makes living with fibro even harder sometimes but I believe we've been chosen to educate others giv them insight and teach them the true meaning of compassion. Its not a task I particularly relish nor one I wanted but if I can pave the way for a better understanding of so called invisible health conditions and mak someones elses life a bit easier then il havta at least try. Try not to take to heart other peoples opinions prejudges, or self righteous beliefs be strong your a valuable loved and decent person with a lot to offer this world. One good thing about fibro is that it allows us to evaluate our life and shift the chaft from the wheat. I choose to keep only positive respectful decent and loyal people as my friends and fibro has definetly shown me whose the chaft and whose the wheat in my circle of family friends and aquaintances and like libbyde ive had to cut ties with some people I once considered friends, this is definetly a scary often sad but in the end positive and liberating experience. Removing the negative influences in ur life can only make you stronger nd helps u trully appriciate ur real friends even more. I wish you strenght lov nd lots of luck for the future )))))((((( warm hugs Dixie

  • U poor love, people can be so cruel, but as the others have said its ignorance.how can anyone understand unless they go through it. I have found such dear friends through these support grroups, and a special friend who has been such a support to me and is like my sister and bst mate rolled into one, although we are a long distance away we will meet one day, she doesn't have fibro but has other health issues, this is where social mdia is at its best, we can all hold each other up in the bad times,have a giggle at the daft hings only we can do and rejoice when we have a good day. I am finding it hard atm as would love to go on outings with my grandchildren but just to get through a 7 hour shift at work kills me, and I then spend the rest of my time sofa hugging,I make things on mysewing machine when my fibro and sponylosis allow my arms to comp.have sold some handmade aprons and the pleasure I get seeing peopls respone to their children and themselves wearing them is immeasurable try and find a hobby that is kind to u,to give u a sense of purpouse,.hope u have a good day,always here if you need a chat hunnie xxx

  • I feel deeply for you.but this is just one negative persons view.

    Like above have said it hurts right now.

    But stay away from that person.if they ask just say i need a friends in my life who can support me be there for me.

    If you cant id prefer it if you stayed away please.people like this will only bring you down not help you.you have your sons who need you.and we all care and nevet judgw x

  • Hi sadoldred

    I haven't been on for a while as i have had a very bad flare up especially with the exhaustion and now i have a summer flu. But i have these updates come through on my phone so I have been reading each day and yours just made me want to come and answer.

    I am so so sorry to hear of your friend saying that, friends are supposed to try to understand a little bit about fibro so they can support us, so that must have been so upsetting to hear.

    I only have one friend left here that i met when i first started work here and although we can go months without talking we usually meet up and have a meal/pictures etc and it is fun (this week i am being taken out as we havent seen each other (apart from last week ) since last year.

    However he text me to ask how my weekend was going yesterday and I said I had

    flu and his response made me feel like a over dramatic hypochondriac which upset me. Just a simple question, "are you sure it is flu and not a simple cold"?

    I then had to proceed to tell him, no runny nose, just burning up one minute but freezing the next, a severe sore throat etc. "Oh yes sounds like flu" he says.

    But why couldn't he take MY word for it? He knows I don't normally get colds or flu so I wouldn't make it up.

    This upset me as although I was not looking for sympathy, nor did I expect I had to explain myself to my one and only friend here.

    I am trying not to let it affect me as I do enjoy my evenings out when i get one and it is my intention to try to remain calm and positive despite how I am feeling but I finally quit on all my other friends here as they were not being friends that it has left me disappointed.

    So I understand how you feel and I really hope you take the advice of Libby and some of the others.

    I feel much better for removing negative people from my life and I just hope this was a one off for my friend as if I get too many negative remarks from him I will stop our friendship as well then I wont have no one here but it isnt good for me, you or anyone with fibro to have negative people in our lives as we have enough to cope with.

    I hope you have a better day today. As for me time to cover up again lol as i am getting the shivers again.

    Take care

    Kia x

  • Dear Sadoldred xx

    I suffer from Fibromyalgia and M.E. My old life consisted of a lovely group of friends , all very caring and loving .BUT THEN........ The illnesses struck. Most of them ran straight for the hills never to be seen again.whilst one or 2 stayed around,I sort of wish they hadn't as they judged me and my illness. They made me feel bad about myself and they kept telling me how they had read how I am going to recover and be fine.

    They did mean well in their own way but they where making me frustrated and questioning myself.

    After a while they too have faded in the distance all but one person who has only ever tried to cheer me up ,listen to me and let me be me.

    What I am trying to say is that it is ok to let go of relationships that are harming you. Even if no one else is left ! We have enough pain to deal with without emotional turmoil caused through "friendships".

    Someone mentioned going to a local support group, if you can manage it then that would be a good thing I think

    Take care huni and wish you lots of luck and love

    Shirley x

  • Some friend, if you had one leg or some visible ailment they would understand and be very forgiving. However, because they can't see anything wrong they don't believe it exists and you are making a fuss about nothing.

    Some friends who do a lot of walking said to me that I should go with them, fat chance, no way I said I just couldn't do it. They said, oh you should try walking a bit each day and gradually go a bit further each day and you'll soon be fine!! Bless them, they just have no comprehension at all.

    I cannot be cross with them because they just don't understand.

  • I haved lived with plain in one sort or another through all my life, bullied at school and I mean back in 60s & 70 s when no one took bulling seriously. I just learnt frothemoa on that no wants t hear how we are feeling... even to this day if soneone asks me how I am I say ok, iof course... would they really want to hear what I am genuinely feeling... no!

    I had two people ths past week who I'd least expect to say ths to me but they said you look terrible are you ok.... I just said, it must be the meds and left it, I don't believe anyone likes hearing about what we are really going through. I have had doctors not even believe I have been in pain especially when i was a child and just think how much they get paid to listen to us.

    why is it if we happen to mention how we really feel or god forbid that we have had brain fg and we have already said it and mention it again... we are the ones that get moaned at! sorry.. moan over... but I learnt this lesson from a. child no ever wanted to listen to how I was really feeling and it's not just the pain, it's how effects us mentally ..... run along dear and get on ith it.... OMG that's the sort f thing our prime minister would say lol xxx ((( hugs to all )))

  • i too have this problem that when someone asks how i am i say i'm fine my husband goes mad and ask why i fib , and it's purely because as soon as i say i feel terrible or what evrpart hurts i get ohh i have that pain or i feel awful or this n that so really it's not really wanting to know how we are really it about the other person wanting us to ask about them so it becomes abou them in the end and i'm happy for them to tell me as i just can't be bothered anymore xx they are selfish people really and they will never truly understand our illness or begin to unless they are in the same shoes x

  • Hi sadoldred iam a fibro sufferer too hun & you are not a fake dont ever think that.I have found that people will not understand the condition.with fibro its imperative that we have to think about about ourselves and what we can manage in life same as you i cancel social things and i dont feel guilty any more if those who i deem to be friends cant be understanding then i wont bother with them any more stick with those who never give up on you and dont give up on life.iam a christian and my faith helps me and prayer too.Anyway feel free to talk to me we sufferers must stick together bless you.

  • Oh how terrible you must be feeling and I can speak from experience when I say I had a lovely group of friends and we always had such fun before I became ill. After they would still ask me to join in, mainly becuase they all ate at mine all weekend which cost me a fortune. When I had reduced wages and asked them to chip in a bit it seemed my illness became a bit fo a drag. Took me a while to realise that true friends are not like that. I relocated and letf them behind and made a few true friends. I am happier and do not regret for one minute cutting out the people who were dragging me down with similar comments to theo ones you are getting. My advise is to kick this so called friend to the curb and surround yourself with people who allow you to be you. There are many of us who suffer the awful fibro and we have no choice in that but we do have a choice in who is in our lives. Anyone who brings me down goes full stop xx

  • Hiya sadoldred,

    just wanting to give you love & freindship on this wonderfull supporting website. We have enough stress as it is,i have had the same so called freinds drop me & let me down.

    Hope your feeling better, take care, gentle hugs....mary xx.

  • Oh dear poor you Saloldred, I so so understand how you feel - its the old story that no-one can see that something is wrong and they imagine we can all just "snap out of it" and be cheeful, when we are infact in agony. They are not proper friends if they say hurtful things, you are cared for and understood by so many people here, and tho we are not "real time" friends, we most certainly have more empathy AND sympathy (both together is the very best one can get I think) than the friends you spoke of.. I have one friend who is inclined to push me to say "I'm fine, how are you " when asked by others how I am, sometimes I can do that, but there is a bit of me that thinks, I wish the people who moan when we aren't up to scratch, could just swap places with us for a day or so and then I think their attiddute would change. I regularly fracture limbs as I also have osteoporosis and its amazing how sympathetic people are when I've got a casst on (I have a splint on atm) cos its something they can see and relate to, they ask how I am and I want to say that the arm, wrist, ankle, whatever .....is fine - its the least of my problems.

    Another thought, is perhaps you could take a look at The Spoon Theory

    butyoudontlooksick.com

    and print it off and let your "friend" read it saying read "fibro" instead of "Lymes" - its very enlightening methinks.

    gentle hugs to you, muchly dottii x

  • ohhhhh i am so sorry that your freind has said those cruel things to you i can only assume they are afraid of seeing you not well and do not know how to deal with it so easier to detache themself your true freinds will always be there for you.... i have been in similar position before i got worse i use to have girly weekends away and nights out and because it wore me out once i was home i decided to slow down and didnt go on a few nights out so now they don't ask me at all now which does upset me but i have a great family support i just get on with my life with my family, you have good freinds on here who know exactley how you are feeling and are always happy to help a fellow fibro freind .... IT IS THEIR LOSS THEY CHOSE TO NOT HAVE YOU IN THEIR LIFE and personally they aint worth having , keep your chin up and take it easy and indulge in the freinds and family who do care xxx

  • what a sanctamonious plonker he must be!!(i bet if he had fibro for a week he would treat it immediately like man flu and take to his bed!!!) i would say ditch him you would be better off in a igloo thousands of miles away from this TOXIC person!!!,take a deep breath and write down what you think of him and give it to him when you are telling him to sling his hook!!!! with a attitude like that he could work for b****y ATOS!!! DEFINATELY DO NOT WASTE ONE MORE MILISECOND GIVING THIS PERSON HEADSPACE HE IS NOT WORTH IT!!! his loss not yours remember,he is not good enough to be your friend ,not the other way round xx

  • there have been a lot of excellent answers on here all out-ruling the awful things your "friend" said. You are rightly hurt and this will take time to heal. I heard something once that may help. If this person had said that "everyone says you are bright blue with red stripes" would you believe him? because his criticism is as untrue as this. People who truly care wouldn't say such unkind things. take care, sandra.

  • Dear sadoldred

    I do so hope you now realize your ex friend is the one with the problem! You do not need an idiot like him in your life. He has said some untrue & very hurtful remarks. You have two wonderful sons who no doubt love you like you love them. They want & need you in their lives.

    You do not need that morons approval in how you live your life, in fact it is none of the a..oles business! Try & surround yourself with people who do understand & truly care about YOU.

    You have more than 20 friends on here who do just that with their comments. I hope you can gain some comfort from that fact.

    Thinking of you, with gentle hugs xxx

  • It is so sad to read how many have gone through this loss of friends and family through mothing we have done. I feel for you and can relate after having lost friends, family and union friends/colleagues (whom I stupidly expected understanding from).

    I was told by one at the time of getting my diagnosis that I should not read the information available as that may cause me to get more symptoms!

    Now having lost almost all of my family who cannot be bothered and most friends?

    I am free at last to stop pushing past my limits in trying to be more active and leaving myself to days of agony. I have met a few new friends who understand my condition somewhat.

    I still feel loss and sadness for those I expected to be there, but they no longer make me feel so bad about a condition ai have limited control over.

    I hope you have a happier future. As so many above have said. You have good, understanding friends here.Fi x

  • He sounds like a friend just asking to be dumped - some people are unable to even begin to empathise and can only believe what seems true to them in their own experience. (My second husband - we are now divorced - was just the same so I do know the type.)

    You are not a fake, you are suffering and trying to be strong - and good God but it is hard isn't it?

    If a friend brings you down then they are not really a friend and it is generally best to let them slip away if they are not willing to be educated.

    Take care

    Julie xx

  • god this is like i have felt many times, my heart goes out to you, when you are ill, and friends or family can't deal with it, i have learnt that this last 8yrs, so i have suffered in silence until last 2yrs. i became suicidal last year hate to admit that,but broke down to my doctor and i now see a fantastic lady once a week who i can say anything to, please don't think of giving up,seek help, and as for those people who don't try and understand you includingfamily,it is there loss, not worth worrying about, done that far to long, just learning myself the hard way, but hey at least we know each other now tc big hug soma xx

  • Hi sadoldred

    I have family and friends who don't accept my condition. I've come to the conclusion now that its not them who HAS to accept it .... it.s me.

    People have their fast lives and their active socialising that I can't do anymore. They're lives haven't changed. I must be a real pain in the bum to have around. A real kill-joy. I don't mean to be. Other people just seem to want to have fun and forget about the suffering of others....even people they care about. Its just not convenient. They see what they see...and most of the time I look ok.... so they put it down to me being wimpish or attention seeking

    So I have my own life and they can dip into it when they wish....and accept me as I am. That way I don't get hurt. There are times I can join in with them and times I can't. (and sometimes now I just don't want to to be honest....when life feels overwhelming)

    Thats what I have to accept.

    Its one thing to know I have this illness and another to accept it. I was diagnosed in 1999 but didn't really accept it until 2010 when I saw it on an EIS scan, (google Rosedale clinic, Reading, Berks to see what an EIS scan is) complete with pretty colours, that there IS something wrong that I have no control over.

    The trouble is there is no definitive test to say THAT is what is out of balance..... Up to that point every test was negative. Even the Fibro test was based on symptoms, word of mouth rather than scientific test. I could easily looked it all up before hand and faked it.... (although I can't really see the point in that)

    Once I began to accept this condition myself, it no longer bothered me what others said to me. They're ignorant.....

    I use a blue badge disabled parking ticket and have cards made up now to hand to people who question it......

    I don't have to keep explaining myself... or trying to prove my condition. It is what it is.....

    I think my own acceptance gave me the ability to listen to other people comments and not kind of half agree with them...... the whole 'maybe their right, maybe I'm putting this on' deep dark secret stuff. Of course that stuff i rubbish.

    I have days when I feel ok and my head says... right this whole thing is not real, I'm just being lazy.... AND THATS MY HEAD. How are others supposed to understand.

    I've been diagnosed 3 different ways now LOL, GP, ME clinic and neurologist....

    and yet I still doubt..... until I saw the scan for myself.

    I hope you find a way to deal with the negative comments..... and enjoy your son. I'm sure you don't really want to take your life. Life is just hard with this condition.

    Do you have a local ME group you can get to where you can meet people who are the same. I find that hugely helpful too.

    Hope you're having a better day today.....

  • well carn't be much of a friend, although, it is hard for people to realise the pain suffered with this illness and also, people look ok, it is hard getting through to some people how bad it is take care xxxx

  • Thanks to everyone who has commented on this. Sorry I havent been on to say thanks, but it had knocked me for six, but I`m stronger now, and dont need these sorts of peeps in my life. So as they say onwards and upwards! Think everyone will agree, once you have been knocked down it just makes you stronger once you are up again? Again many thanks, its very nice to know that there are people out there that understand. Sending you all a big hug :) x

  • Well done and that's the spirit Sadoldred!! You don't need negative people in your life, you will feel stronger because of this - onward and upward! Take care and we are all here for you whenever you need a shoulder to lean on etc. Here's a hug :)

  • Dear sad we have all gone

    through this. These kind of

    people have no clue if there

    not supportive you don't need

    them. My brother was Just

    diagnosed with fibro. He apologized for all the years he

    Talked about me using fibro

    As an excuse for not going

    Places or doing things. So you

    These people never know if

    They might have to live another's

    Misfortune! So hang in there

    Do what's best for you and the

    He'll with people who aren't

    Supportive. Hope this helps. X

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