Sorry another venting session... - Fibromyalgia Acti...

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Sorry another venting session...

trae profile image
trae
28 Replies

Has anyone got any advice on how to get family members to believe me? I've just found out from my uncle that as far as my mum/dad and siblings are concerned I'm faking fibro and hms. I mean how can you fake being in pain 24/7? They recon I'm googling symptoms and play acting on them. So disappointed in them that they think I would do something like that for sympathy. Do they not see the pain I'm in? Do they not think I'd love to go out and get a job and be ' normal' ? I've considered giving them my medical notes - but why should I? It's not something I'm proud of, but it's something I'm stuck with. I walk with crutches, have a walking stick for indoors and short trips. I have hand supports and modifications done to the house to help me. I even suffer incontinence when I'm really bad with it (like anyone would want to fake that!!!) So how can that suggest faking???

So sorry for this guys I'm just so upset and angry. I'd expect this treatment from strangers, not my family. I just suddenly feel so lost.

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trae profile image
trae
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28 Replies
Sthandra profile image
Sthandra

I'm sorry to say my dad and older brother treat me the same the only one's who believe me were my mum but she is sadly gone and my younger brother they have it to so they know you can't fake it . Your family may come round in time but there is no real way to make anyone believe you. Try not to get angry with them It will only make you feel bad, they may end up in the same boat as you some time till that happens just put your self first before them. Gentle hugs hope this helps my heads a bit out of here at the moment due to fibro fog meds and pain so it may be a load of twaddle. Gentle hugs. Sithy :-)

trae profile image
trae

Thankyou so much sithy x I know it's not my fault they don't believe me, I'm just so disappointed because I thought they did, till my uncle mentioned he was fighting my corner.

In saying that, now I've slept on it I'm still annoyed but nowhere near as annoyed when I wrote the blog (does that make sense?)

Ok fibro fog kicking in - joy!

I'm sorry you're having the same problems I'm experiencing, but at the same time I'm glad you could help. I know I'm not alony in this. Thankyou for getting back to me about this, I know it's atouchy subject for most x gentle hugs xxT.xx

kobi profile image
kobi

Try to rise above these petty minded people, you have enough to contend with! Positive thinking and lots of love x

trae profile image
trae

Thankyou so much kobi xx

sudu76 profile image
sudu76

I am in the same boat as my husband is not believe much about me. I have no body here to and I am fighting alone with my pains and house work, my sick child. People over here are the only relief. So, try to be positive, you are not alone.

Big Hug.

aura2 profile image
aura2

Hugs for you .. Hard to explain to people who do not want to undstand . Try not to take on board thier lack of understanding x

gardaqueen profile image
gardaqueen

so sorry to hear about your problems. Sometimes it is easier for family to pretend it is not happening than to have to adjust their behaviour to accomodate your fibro. My family were so used to me being the 'capable, willing' one that when that was threatened they could'nt cope with it.

With the help of this site I have now learned to dismiss those who don't believe me - and more importantly, to say a firm NO when I can't or don't want to do something because it will make my symptoms worse. I wish I had learned this years ago - maybe I would now get the understanding and respect we all deserve. Even before I was ill I was always 'good old Heather' - she'll do it.

Concentrate on YOU and let those people further into your life that can make positive and helpful contributions.

I am sending you such BIG hugs, because I know what a shock it is to your system when your so called nearest and dearest and not there for you - you expect that from strangers, and sadly even some health professionals.

xxx

Where to start .... people cannot see pain and therefore cannot understand it and until they have the pain of this kind of illness they never will. yes give them your medical notes and let them read what is written this is something they cannot deny , also my doctor was very prepared to talk with my family , you could set up a meeting for this with your family . Ok why should you ? it settles matters so you do not have to vent about it you can get on with receiving the help from your family you need.

Also people are very fickle in their thinking of medical matters ( lack of knowledge) , let me explain .... you use crutches and sticks and i would imagine other items to help you , this alone does not say 'please believe me' , I have failed back surgery syndrome, widespread arthritis which is bending my hands and feet ect in all directions, fibro, ibs, balance problems due to neurosurgery you could say i am medically challenged lol but here is the point , i do not use crutches or sticks, i walk slowly and like i am drunk , i live alone and cope very well now then when people see other people with more illnesess or whatever they think why are you making such an issue when there is someone like that coping and getting on, i worked with fibro for ten years until my failed back surgery. Do you understand what i mean they make comparisons thats human nature , they need to see it in writing so to speak. So just bite your tongue and help them understand by showing them or taking them with you on your next visit to the docs or hosptial my mum comes with me on every visit bless her so you can tell the rest of my family what is happening . Hope this helps you

take care

katheryn

I'm sorry to hear your problems, and sympathise with the lack of understanding. I think most of us have had that from some people in our lives, but it is hard when it is your close family! I would just like to add one thing though - you are basing a lot on what your uncle has said. If you thought your family believed you, then I assume they behaved towards you in a way that showed that. Maybe your uncle has misunderstood, or is exaggerating. Maybe he has a vested interest in being seen as the one who is 'fighting your corner'. Unless you hear it directly from the people concerned, it is difficult to be certain.

I found one way of dealing with this was to present a 'new research finding' I'd found (for example, on this forum). The response to that can tell you a lot! And it varies from complete disinterest, to a warm response of 'how wonderful if that can help' to that moment when the person realises that what you have is a real illness that real doctors carry out real research into - lol!

Of course it is hurtful to believe that your family think you're faking. I do hope you are able to find a way of getting past it - by whichever route is best for YOU!

xx

I'm one of 9 trae and only one accepts it and she lives in the states. One brother has anotheer friend who has it.....but he says my symptoms are different and his friend is a genuine case !

I've stopped fighting them now...its not my job to teach....

I only accepted fully when I has an EIS scan and saw the chemical imbalances in pretty colours.

Once I had accepted the truth of it myself it became easier to see their ignorance and accept it as that.

I am left with the knowledge now that I am who I am....people can either take it or leave it......I certainly don't have to justify it.

I spend time with family as I've always....I just stay off the subject of my condition and pace quietly as best I can. I do as much as I can and no longer feel guilty saying no.

It all takes time.....we can't change them.....we can only change our own attitude towards them and around them.

in reply to

Well said i totally agree with you , my life as been alot easier since i changed my attitude around my family take care and peace be with you always

katheryn

trae profile image
trae

Thankyou everyone. Thankyou all so much. I'm taking on board everything you've all said and I'm so grateful for you taking the time to reply. I was hoping to reply to you all individually but my hands aren't for allowing it I'm afraid x thankyou all again xx

spidey profile image
spidey

Hi Tae. I would suggest e mailing your family members and putting this in as a link and suggesting they watch it.

youtube.com/watch?v=8RnKQSL...

trae profile image
trae

Thankyou so much xxx

You know what is it really going to help yourself by getting upset and angry?

No of course it isn't!!!

You might want to go down that road and say to yourself, if they had a serious one

like me they would be banging on about it big time.

It's not worth getting in a sweat about it.

What an insensitive bunch.

But hello uncle what's his name? Keep your "we'll meaning gossip" (not!!) to yourself.

Throwing that sort of talk into the mix is not going to help one iota.

In my opinion eventually they will come round to believing you.

They will be full of self remorse for doubting you.

In the meantime look after number one. Because frankly you need this, like you need

A hole in your head.

Best wishes, Bibileatherdale

trae profile image
trae

Thankyou so much x I've calmed down since writing this blog as I knew I was just going to make myself ill if I didn't (stress causes my flare ups) so I've now dusted myself off and decided that they can think what they want. They don't live with it day in day out so what do they know. I'm not blaming my uncle because I know he suffers alot with this too and has the same problem with his mum. He was basically letting me know that he knew how I felt and said something that I took to heart. I just had to have a blow out at the time it happened or I would have made a few phone calls I'd most likely regret. Thankyou all for taking the time to respond to me and show me I'm nor alone with this struggle. It's so nice to feel accepted and be amongst friends who really do understand :) xxT.xx

Corpew profile image
Corpew

I feel so sorry for you I have a loving husband who cares for me and looks after me but like you some of my siblings think I am putting it on and I am not ill but I just think one day they will be human and belive what is in front of them until that day I get on with my life and don't tell them a thing about myself I don't see them unless I have to and think its there loss not mine.

trae profile image
trae

Thankyou x very well put aswell xx thanks xx

debiok profile image
debiok

My darling, when started having pain my daughter(21) thought I was 'lazy', that hurt so much because I hurt all over! I didn't want to leave the house in case of 'accidents". It was only when I gave her the info on fibro that I had been packed of from the hospital with that she finally started to realise I was not faking! Saying that I still only get any thought for my pain when her German shepherd, who suffers with bad hips! She tells me 'I know how you feel mum cos shadow is in such pain he can hardly walk!! So I know how you feel, just remember my lovely ... You are not alone xx

trae profile image
trae

Thankyou. I suppose it's really hard to understand if you don't suffer it yourself. Aww hope shaddow feels better soon xx hugs xxT.xx

sandycat profile image
sandycat

hi trae. i am so sorry your family cant understand, i know how you feel, my aprtner and i have been together for 2 yrs, i have had fibro for nearly 2 yrs, he says he understands i am always in a lot of pain, but i really dont think he does as he hardly ever helps me around the houe or even offers to cook, i do have to lovely daughters 20 and 15, they are good, they do gelp but they young and mostly out, so i feel alone at times, yes it is prob hard for our friends and famikly to get how we feel if they have never suffered with fibro, but still, they have seen we on many meds and we get so very tired, depressed e,t,c. i am sure plenty of people think i am lazy, i use a stick ehrn out, but i feel i need crutches on one at least, its nice to see that some of us do have loving partners who help, i do hope you feel calmer soon trae, xx

trae profile image
trae

Thankyou x I'm sorry your partner doesn't help more. Mine does most of the housework and I help when I can - but it still a struggle to even do that. I feel lots calmer now, thankyou xx

kilts profile image
kilts

Go onto u tube and type in

What it feels like to have fibromyalgia u will see. Video of people boxing and it shows in simple terms what we have to put up with. My family nos how ill I am but they watched this video and was in shock of how bad it really is .

Take careichelle

trae profile image
trae in reply to kilts

Thsnkyou so much. I'm defo going to look for it xx

Prettywomen profile image
Prettywomen

Hi Trae. I'm sorry to hear what you and a lot of people on here go through with family's. I'm really lucky my hubby cooks our meals, he and my daughter's tell me not to do things my daughter who lives at home say's leave it I'll do it later. lol I am very stubborn and like to try to do some house work, ok so it really hurts but it's no better if I sit down. My head still tell's me I can do it my body say's I can't and when I have done some things my head agree's with my body. My dear Mom and late dear Dad and sister are all supportive as they also have Arthritis and my sister has Fibro. I use to crutches they help stop me from falling over but gosh they hurt my hands and arms can't win. It is hard for people who don't have this pain we wouldn't wish it on anyone and wish we didn't have it. After my hospital appointment with the fibro specialist who told me what I had, I gave my husband and girls the info he gave me to read so the could see what I am going through. Maybe it would your family if they could read all about Fibro. Take care hugs Sally. xx

trae profile image
trae

Thankyou so much. I'm the same lol neef to start listening to my body more x sadly my family are the type who just don't want to know. No amount of persuation helps I'm afraid xx thankyou for your advice though, it's very much appreciated xx

jillylin profile image
jillylin

Hugs. I gave my hubby "The spoon Theory" to read which helped him understand to a certain extent. But I hear what you are saying about family just not wanting to know :-(

Hugs

Jillyxx

trae profile image
trae

Thanks jilly xx it's a shame but at the end of the day it's their loss xxx

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