Sorebones7 years ago

Well, I for one wouldn't call them friends. No friend would speak to you like that. Who made them the font of Fibro knowledge? Sadly they are not alone in their thinking and it seems such a battle to educate both medical and non medical people about the hell that is Fibro. You must have been devastated.

How you deal with it is up to you. I don't envy you. I am not at all sure how I would handle the situation. I would either call them all together and give them printouts of Fibro facts, or never want them to cross my door again.

I hope you find way to deal with it with your obvious dignity 🐸

Waterbottle in reply to Sorebones7 years ago

My husband has said that they have never supported us throughout the years of hell. And we must make new friends now so we have decided to remove them from my friends list. It is hard and I have known them for years but my health and sanity is far more important now.

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Sorebones in reply to Waterbottle7 years ago

It most certainly is. Good for you 🐸

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Hidden in reply to Waterbottle7 years ago

Your husband is right, with friends like these who needs enemies 👎

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Devonie in reply to Hidden7 years ago

I 100% agree. Those of us who know our own pain and have researched our own condition know only too well how ignorant people can be. If they had looked into this properly they should have at least had an awareness of the basics. i am sooo angry for you. Sounds to me like these people have nothing better to do than to snoop and cause trouple. Definitely not friends you want anywhere near you. Keep your chin up, you will be far better off without them, plus, you have loads of support on here. I know it's not the same but when it comes to being believed I'm guessing we all know how you feel. Sending gentle hugs x

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Hidden7 years ago

Sorebones has made a fair point in that even medical people have difficulty with this illness and with that in mind I can understand your friends difficulty in understanding.

It doesn't make it right that they have done or how they have treated you. I work with people who do not understand fully the implications of living with fibro but they will sympathise with me when I have a bad day. Only a few of my 'friends' know. If I cancel an meet up or outing they don't fully understand but will go along with me more out of politeness than anything else.

You have to decide if your friends mean well and now they have done their research will be able to understand your needs in greater detail. Maybe the fact they actually researched it means they do care. Not knowing them it is hard to say

My daughters have spent a lot of time researching about Fibro so that they can both understand and be of help. They are not telling me I should try this or that, but trying to find a better way for me to do things and are more understanding on a girly shopping day, they lower the speed they walk to accommodate me and build in rest times so I don't get over tired. I am not saying that is what your friends are doing but just maybe?

I hope you can work something out that makes you feel the person you should be

Hidden7 years ago

hi there with friends like that who needs enemies, its ok for them to say its all in your mind you know where hurts the most not them, and the check to say that your only doing this for sympathy i'd get rid of them and choose friends that know what you going through take care and i'm 100% behind you on this. Alan

Telynores7 years ago

By your heading I was looking for a fairytale ending.

What I was thinking when I was reading your post has been said and I believe you should be validated by everyone here.

I cannot imagine how they could interpret any information on fibro as they have. If you had the energy you might, over time, be able to educate them but that's stressful, consuming of energy.

Look after yourself, rule no.1

mason7 years ago

hi so sorry you had to put up with this claptrap your husband is right they are not friends friends dont go behind your back .me i would google 100 symptoms of fibromyalgia photocopy them tick all that you have and send them to your friends tell them to come on this site and read all about the hell you live with sending softst hugs you have lots of friends on here ,

Lou10627 years ago

I would be interested to know what research they did, they are not friends in my opinion. Who would choose to live in pain. What they may have homed in on is the information that CBT can be helpful and drawn the conclusion that it can all be cured with a good chat, CBT for our condition is aimed at helping us accept, not a cure, also for every helpful piece on Fibromyalgia there are at least a dozen dismissing it. You should not waste your energy on these people. We are diagnosed by experts who are qualified in their field of medicine, Fibromyalgia is recognised at government level. I am going in to rant mode so will have to stop. Love and hugs. Lou xxx

Katherineanne7 years ago

Oh, gosh I am sorry they thought their actions painted up as fake care and love is how they decided to help you. That was no help at all. Unfortunately, adversity can show amazing things in a person as well as negative. I think they did that to "let themselves off the hook" emotionally. If they weren't there for you... Your right, they already told you who they were with their actions. You don't need or deserve friends like that. Do you know that often people are removed from our lives for the sole reason that something better is about to come along...making room for the good.. Getting rid of the toxic and "bad"? Honestly I'm not sure how the good and positive will show up for you, but it will show up in the manner and way it is supposed to... Meaning that it may be simply that you have realize...what is a friend and what is not a friend and that you would rather be able to count those you call a friend on two fingers than 20 if the ones on two fingers are worth the weight of 100. I'm guessing here but I certainly have had some form of that happens to some degree to me, maybe not exactly as you have, but friends falling to the wayside, disappearing and not calling. I am truly sorry that happened. I know that you are very hurt and you feel disposable right now. You are not disposable you are not " less"than and you are NOT unworthy. You are more than good enough! You are a value as a person and you ARE worthwhile. Probably, at this moment you do not feel that way. I understand. Sometimes we have to observe what is going on to be able to move through all the muck and the junk... to find the beautiful and amazing. Please do not ever hesitate to contact me..

to get the support you deserve and need as well as, the care of what friends who have not even met you can give it to you versus the person/persons who call themselves your friend, right in front of you... but does not act in that manner. Again contact me or anybody else who extends themselves to you...you are not alone.

With big love and care for you today and Everyday!!!

Katherine

poppyflowergirl7 years ago

wow, five million Americans all using the same lie/excuse (sorry couldn't find UK stats) we thats lots of us all making up the same excuse, having the exact same pain, the enjoyment of being in constant pain and like you I have put on four stone, feeling fabulous about it all!!

To be honest, we all encounter people of a daily bases that just do not understand, even my husband is bored by it all, people are ignorant and there is so much on the internet about how hard fibro is, and very little about it being made up so they must have searched hard. Don't allow people to bring you down, they must think they are acting in your best interest but obviously got it wrong.....an intervention for fibro!

I can see above that you have had some lovely messages from people that DO understand and DO care, big hugs, stay warm and stay positive x

hamble99b7 years ago

this is from 2004.

fmauk.org/information-packs...

Regnofibro17 years ago

So sorry. But not true friends. Good for for standing up for yourself! You rest and try to feel better soon. I know what your feeling had that battle it was not fun and hurts the soul. You will heal from that and move on. We are your friends and will support you. Hugs sweetheart

joannie19647 years ago

Lost for words (unlike me!) but not surprised. In times of adversity people show their true colours. They have lost a true friend in you, unlike the other way round my lovely. Yes it hurts, I know, and when we are low, it hurts even deeper. But hold your head high, and let these toxic people go. Reach out to us when you need to ....we will always be here for you.

Gentle hugs

Jo xx

rosewine7 years ago

I honestly don't know what to say that will make you feel better but I think the majority of people on this site if they are honest have had similar things happen with both friends and family, I certainly have. You find people you have known for years melting away for a variety of reasons. If you have to keep on cancelling outings which unfortunately alot of us do I wonder if sometimes they think it is a case of us not wanting to go rather than the fact we can't so in the end stop asking. Others can't stand any kind of illness and melt away as they cannot cope or do not know what to say to us. Others were only friends whilst we had a lot to offer e.g. doing things for them, giving lifts etc and when this has to be curtailed because of illness our usefulness it over. Then you have the few friends who stick by you and these are normally in my experience the ones who are suffering some type of illness themselves so understand that some days we are below par so can't meet them or if we do go out we need to curtail the outing.

Friends that we have made since we have been ill are accepting of us as we are and even though new friendships might take time to build and we may miss our old "friends" they can be very rewarding so your husbands suggestion might be a good one. It could be that new friendships might be on a different basis e.g. more phone calls and e mails than physically seeing them but it is still a connection.

It is still extremely hurtful to realise that people you have known for so long don't understand but often we are stronger than we think. Being "friends" with people who are not on your side can be extremely draining emotionally as you have to keep on explaining yourself and sometimes cutting the ties completely can actually be a relief.

I do hope you and your husband do make new friends who are accepting of your condition.x

TheAuthor7 years ago

I have read your post with so much pain and sorrow for how you must be feeling inside. I am certain that many others members can relate to losing friends as a result of not being believed or understood about Fibro?

I think that you have two choices here, you can either delete them as friends. Or show them the information that hamble99b has placed on the thread about Fibro, and give them a second chance? If you feel that they deserve a second chance?

Whatever you decide, I want to genuinely and sincerely wish you all the best of luck. Please take care of yourself.

Al my hopes and dreams for you

Ken x

Hidden7 years ago

Oh dear! So sorry to hear that those you considered friends have treated you this way.

A similar thing happened to me a few years ago after several surgeries and the onset/worsening of fibromyalgia. This didn't include just friends but my ex partner of 18 years and his family. What felt terrible at the time and so hard to deal with was actually turned into a great positive. After being totally written off by joint friends, ex's family and then ex leaving For someone he had been seeing behind my back for a while. We didn't have any children, just our home which I still live in.

I kept a couple of my real friends through this and connected with others through them when I wasn't well. I have to add that my family and real friends have supported me throughout this upheaval and my health struggles and repeatedly told me I was better off without all the negatives and my ex but I was too unwell and daft at the time to do anything about it.

A few years ago I had met someone through friends that I really got on with who eventually became my new partner (it was actually quite quickly after my ex left - he said he had been waiting for the right time... Awwww). Although my health got worse and I had to leave my job on the summer I'm actually the happiest I've been in years. I no longer have to constantly apologise, feel guilty for being unwell, push myself too hard to work full time and manage all housework myself.

I guess everyone I didn't really need in my life had done me a favour. It hurt so much at the time and I kinda mourned what I thought I'd lost For a while. Once I had dealt with the hurt feelings I felt like a black cloud had been lifted and my old life ended 2 years ago. It did take some months to fully get over it and it did affect my conditions negatively at the time - that was out of my control. I hated the fact that it affected me so badly and that I was so emotional about it but that was just part of the process of dealing with it and is perfectly natural. I'd happily have only one real friend (or none and just my partner) rather than a ton of judgemental acquaintances!

You are correct when you say that no one would choose to have this horrible condition - I'd much rather be well and back in my old job that I loved and was good at earning a high wage rather than being on benefits! I hope that this turns into a positive for you as it did for me.

One thought, do you have a local fibromyalgia support group? Maybe connecting with others that understand, like here might be an idea? This forum has also been a great source of great comfort and support at times I've not been able to discuss my thoughts and feelings with those close to me.

My goal this year is to visit a good friend in Chicago with my partner as he hasn't met her and I've not been able to visit for 3 years. I want to go for Halloween again as it was brilliant! We have joked about secretly getting married while there as its about $60.

All the best to you and your partner through this difficult time.

Clare xx

Edit: I just realised I forgot to mention my biggest support... My cat Eric, he's been great over the last 7 years! He's deaf and lives indoors so he can be a handful, but he's always there and knows to come giving cuddles and nuzzles when I'm feeling down. He was born on my birthday with his brothers and the runt of the litter. He was rejected by his mum so I was asked by a distraught friend to help so I took him very young and bottle fed him etc. It was only meant to be temporary but there was no way I was giving him back as we bonded instantly. Eric is very needy and even when I didn't feel like looking after myself I knew I had to look after him. I'm known as the crazy cat lady in my family as Eric has his own bedroom and he's totally spoiled. He doesn't take to people easily as it takes him a long time to trust, he didn't like my ex much (they say cats are great judges of character!) but he quickly become best friends with my partner - that's a huge endorsement from him ha ha.

Waterbottle in reply to Hidden7 years ago

Hi I also have t wonder dogs called Alfie and toffee and they bring me so much comfort and happiness. They understand I a, sure when I feel so ill they just cuddle up to me. When I am crying in pain they lick my hand and that makes me feel less alone. My husband works awful hours 3pm-2am 5 days a week so without carers I am alone for many hours.

Thank you for you reply xxx

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Hidden in reply to Waterbottle7 years ago

Hiya

It's very hard to be alone with yourself and your thoughts and feelings when dealing with chronic illness. It's taken me time to learn how to deal with it, especially last night when I only managed a couple of naps all night due to pain in my shoulder even though I'm taking heavy duty meds. I'm regularly awake all night when my partner and Eric are snoring away. Sometimes it can be 2/3 times a week. This forum and the people I've connected with here are sometimes awake too as are my friends in other time zones so I'm lucky.

Pets are a great comfort, and yes I'm sure they know when you need cuddles! I tend to end up with other people's cast offs! I once looked after a neighbours gerbils and they asked me if I wanted to keep them as they didn't want them so I did! And about 2 years ago I went to pets at home for cat food and litter and happened to look at the fish. There was a little black goldfish with one eye and I had to take him home as I didn't think anyone else would - I even call him fsh as he has an eye missing ha ha.

Seriously though, I don't want you to automatically think from my reply that your friends suggests it's not worth trying to reconcile. I didn't have any choice in the matter when things happened to me. If you feel able and want to have a think and see if you can be honest with them about how it made you feel, tell them what you have to deal with (without censoring it as we all usually do) and maybe order the information from FMA UK and give it to them. Sometimes people are not intentionally insensitive, just don't know how to express things and maybe just wanted you to know that they wanted to help but went about it the wrong way - sometimes honesty isn't a bad thing. I know my relationship with my friends they can and have (one in particular) asked me if I'd embellished my story when I was awarded enhanced PIP for care and mobility without argument and then ESA support group. She herself has a chronic back problem after an injury at work so I know she was asking rather than judging - which I'm guessing is the difference. I just wouldn't dismiss a possible reconcile without a lot of thought - at least then you can have no regrets later even if it doesn't work out.

I wish you well, keep in touch, I'd be interested to know what you decide

Clare xxx

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Midori7 years ago

Some friends, NOT! You don't need 'em. Last time anyone tried telling me how to manage my Fibro, I asked them when, where and what their Medical Degrees were. Of course they couldn't provide that info, so I then asked why they thought they knew better than the Consultants I was under. I haven't seen them since!

Hidden7 years ago

Hi maybe you are better off without them, but sad for you , as some of them long standing so called friends. I wish you well and the best of health you can get. Take care.xx

achydunlin7 years ago

How awful! They sound like terrible people and you are well shot of them. I think your husband is right. Find new friends. So fibro is all in the head is it? So I went to bed last night at 8.00 pm aching all over, full up with pain relief tablets, fatigued beyond belief (after just an ordinary day - done nothing out of the ordinary)... and I must have imagined it? I wish I could have a word with your so-called friends.

I haven't had those reactions, on the whole the people around me - my friends, family and colleagues have been supportive. In fact, one friend said that they didn't believe her mother in law when she said she had fibro and thought it was rubbish until I was diagnosed and decided as I had it and 'wasn't a hypochondriac'!! LOL then it must be real!!! I just howled and suggested she show her mother in law a bit more sympathy and care.

My dad was skeptical at first - not that he didn't believe I was ill, but that he thought fibro was 'made up', that was until he talked to a doctor about it and then found several of his friends and neighbours have it. I've found that there's a bit of reticence amongst people to talk about it - after telling people I have it, it's since come out that I know over a dozen people in my small town with it but they won't admit it for fear of ridicule. I don't really care what people think, if they think I'm faking then they can bugger off, if they are a friend then they would no longer be a friend...

Take care and I hope you are feeling better xxx

Pennie17 years ago

What awful people, turn your back on them, it's hard enough to get through the day sometimes and the last thing you need are these clowns 🤓🤓🤓🤓🙊🙊🙊

Pennie17 years ago

Hi, turn your back on them, it's hard enough getting through the day sometimes and the last thing you need are these clowns hanging around and getting you down 😡😡😡😘😘😘😘

Mad_scientist_7 years ago

Good grief! What did they read - stuff from 20 years ago? At least you know how they feel now. Don't get sad, get mad 😡

Then be glad your husband understands and stick with the friends that really care.

Waterbottle7 years ago

I have an update this morning I received a huge bunch of flowers from the ladies that had their gathering about me. Two of them have said they felt like they were pressured into agreeing with some of them and they know me well enough to understand I must be suffering. But also they said they have since read up on another site and feel so guilty they haven't been round to support me, but they also added they did t know what to say to me.

I have said that in a few days they can come round just the two of them and see me and read some of the lists on this forum and then they will be able to understand more.

I don't think I a, being weak I think that if 30 years of friend ship is over so soon and they have apologised and willing to learn more about it I will at least give the. A chance.

TheAuthor in reply to Waterbottle7 years ago

I am so genuinely delighted for you, I really am. At least two of them have some sense. I genuinely hope that you can rekindle your friendship with them.

All my hopes and dreams for you

Ken

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ference507 years ago

Really sorry to hear what so called friends could do but it's like they say when the chips are down you really do find out who your real friends are don't waste your time or your tears on people that don't deserve them if they were any kind of friend they would believe you and be there for you regardless but like us all we have all lost so many so called friends through this I thought it was bad enough getting the diagnosis but hurt to find out what so called friends say I was told isn't that a made up illness I look to Facebook to find out what to expect from fibro because I get told very little from docs when I go see docs all they say now is that's fibro then do nothing and give nothing I digress honey make new friends talk to people that know what your feeling and understand and support you friends will always be here honey take care gentle hugs xx

Hidden7 years ago

Dear Waterbottle,

Plain and simple - not friends at all.

If you wanted to be generous, you could call them misguided to say the least. I am not generous and would call them a number of things that cannot be posted here.

I really do hope that time will heal the pain that they have caused you.

Best wishes,

Dave

Waterbottle in reply to Hidden7 years ago

Have just had a call from them saying they have had to make a choice with the other people involved and they are sorry but they are not coming, to day how upset I am is an understatement I am sat InTears thinking I was being forgiving they have once again smacked me in the face.

Well I feel I had had the mickey taken out of me and it now is the end with them and once again I have been left feeling a fool

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TheAuthor in reply to Waterbottle7 years ago

Oh no! I have just left you another message saying how happy I am for you. I am so genuinely and sincerely sorry my friend. Please put yourself first in this and if they mess you around look after yourself first, please x

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nix_in71 in reply to Waterbottle7 years ago

They are the fools! I am a firm believer in karma

Xxx

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Hidden7 years ago

You have been the better person and gone down the forgiveness route. To me, that says an awful lot about the nice person that you must be.

I once read Colin Powell's (US Statesman, soldier etc) life story. One of his rules was 'get mad and then get over it'. Whenever I used to get annoyed about something, I found remembering this helped as it taught me not to dwell on things for too long.

Life is too short and time is precious. Spend it with those who you love and who love you back.

I really do hope that these so called friends never find themselves in a position where the experience 10% of the pain that we have.

I hope that this helps.

maggi999 in reply to Hidden7 years ago

Is it evil of me to say I hope they do???

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Hidden7 years ago

What exactly do they want you to do have you a secret cure that can cheange things to suit there mindset let them walk in your shoes for aday they would soon change there minds I have a family member that says I am playing the victim you just have to let them think what they want you have a good partner by your side dust yourself down and forget them hope you feel better about things soon

Hidden7 years ago

I am so sorry you had such unfeeling friends but I have to say with friends like that you don't need enemies. I would love to give these people who are so bigoted a day in my/fibro life see how they get on with it, but tell them it's for life they would soon skwalk another song. People have no concept of what it's like living with fibro day in day out knowing it's never going to get better and knowing that u feel bad when u go to bed but are so scared it's going to be worse in the morning what do they think it does to you as a person? and to have people like that calling themselves your friends

Giving you no support whatsoever it is just wrong. If you had broken limbs missing limbs anything they could see they would probably feel different and praise you for the way ur managing but because it's a silent disease that also hides all it can do people can't understand. But please don't cry anymore it makes me feel so sad as I have been there and still find that I apologise for feeling bad when there is no need to so look at all of us on hear we all have fm we all know what you are going through as we go through the same but possible slightly different things everything takes people differently but be assured that I for one know how you feel and anytime you feel like a rant or just a chat post on here and I will possible along with many others will hopefully help you to feel a little less down about yourself. Please don't listen to those so called friends. My name is Christina in case anyone wants to post I'm not very good with these things it's a new learning curve for me so please be patient lol is the fibro lets you. Thank you for allowing me into this group of amazing people. C

maggi9997 years ago

My heart goes out to you.

I've had some detestable reactions from a few people in my life (particularly my male cousin who now 'can't understand' why I now don't want to go to his wedding next month - basically I now don't want to waste my valuable energy on him!).

But I've now found out who my real friends are.

I hope you have some genuine support in your social and family circle, if not, you always have us xx

GillyGangGong7 years ago

It's amazing how people can just give up on someone they are supposed to love. I do believe they don't know what to say,

plus It's hard to watch somebody in pain all the time or feeling miserable depressed ect.. It's all about them you see👀 when you can't be there physically & emotionally 100% of the time.

Because your dealing with your own pain tormented feelings & fears

all the while nobody believes you thinks youve become lazyi could go on for hours.. But What sort of people have a vote on whether to stand by you!

You may have already grieved a hundred times already each time they may have abandoned you or not give you a second thought. I'm sure we have all gone through similar scenarios while on your Fibro journey I know I have.

when you was so ill you couldn't deal other people's problems so they left you alone to deal with your feelings of helplessness and hopelessness and scared to death!

these so called friends probably are at the moment causing you more pain in doing so have become toxic It's easier let go them go honestly! 'wish them well and move on

Your husbands right they haven't been there for you (I'm glad you got your husband to understand) I suppose it helps when they see you everyday and have lived through the nightmare of these debilitating illnesses.

Good luck! 💕

Annunnaki7 years ago

Hi. I'm sorry you're going through this. I understand as I also lost friends. One simply stated she found I changed and she doesn't have anything in common with me anymore. She was never the kindness of people. I Tend to accept people as they are and don't expect anyone to follow my values. I don't think we need friends like that. You could send them recognised reserch, "so they don't treat someone else the same way" and see what they do. If they appologise then they were simply mistaken. If not, their concept of friendship is not yours, or mine it seem. I hope you have other, genuine people in your life. And heal swiftly from this loss.

Blessings.

Waterbottle7 years ago

Hello

What a wonderful group this is. I haven't been on because I have pulled a muscle in my left shoulder, this has left me very venerable, as you all know I have a right side paralysis this has caused me great difficulty in the most basic thing like going to the loo. They have increased my hours on the care package till I can look after my self. Saying that they have now gone the (carers) and I am all alone till 2am.

I can't get in and out of bed on my own so will have to wait up for you husband to help me. They have Increaed my orimorph which is helping with the the pain.

So please forgive me for not being on much but typing is so hard.

Love to you all

Anjila7 years ago

friends like that are not friends unless you have this "problem" no one can begin to understand how you are feeling. there are lots of honest people on here that you can rely on as friends who will sympathise with you. take care and warm hugs to you

nix_in717 years ago

WOW! Just ...WOw!!!!

I have discovered in the time I have had the chronic pain diagnosis (possibly fibromyalgia but I too have been accused of making it up) that you certainly discover who your real friends are. I am down to 3! Having had a large social friendship circle.

Like you I had a good cry and got so upset I ended up in bed because of the added pain from the stress.

PLEASE don't waste anymore of your precious time on these people. I have learnt that whilst my so called friends have disappeared some real ones are here to chat almost anytime.

I have found this site to be very supportive and the people here all are friendly and understanding.

I'm so sorry you had to go through that. Gently hugs

Niki xx

Waterbottle in reply to nix_in717 years ago

Thank you Nike

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Hidden7 years ago

I am so sorry this has happened to you, and no, you are not going mad. You just haven't been fortunate enough to find the right kind of medical support, yet. Don't give up. Perhaps consider changing your doctor (and those 'friends'). Perhaps consider counselling, and get the counsellor to help you make a plan of action where you can start to turn your life around, get the right treatment, and start to enjoy life again. I wish you good luck, and send you kind thoughts and a big hug. Sheila.

Waterbottle7 years ago

I am so sorry for not being on again. I have been so low and I know I can come here and find support but I had reached a different low and was sent to the well being clinic. I felt like ending it all to be honest was just a brief thought and I can't understand why I reached this low and was acting so selfish.

People seem to think living with pain is something you get used to but it is not is it? My husband has been a brick but the care people I have had have I feel let me down. I have spoken to my care manager and she is going to discuss what's happened.

Having fibro and CFS and chronic asthma is so hard to deal with on an individual basis.

I have re-applied for the PIP as my comdtion has changed so much and I need even more help now. They have sent me a letter back saying they are waiting for letters back and will want to another assessment to confirm what I have stated is true? That made me feel like I had lied, how do they think people feel sending them letters like that?

I am so sorry I haven't asked about everyone else and how you are doing please don't think I am being selfish or self absorbed.

Love to you all Dianne xx