I was finally diagnosed with Fibro last November/December after many tests (as you will all know) and initial tentative diagnosis of rheumatoid arthritis.
My own family have been great and trying to understand (it helps that my mum has a friend with Fibro and she herself has RA so a basic understanding of some of the problems), my friends don't understand but do try and always make an effort of asking how I am and asking questions in order to try and understand.
My MiL however has told me that Fibro is a "dustbin diagnosis" and it's just few aches and pains that everyone suffers with... I've tried to explain that no, it's more than that but find myself getting flustered. I'm also struggling with explaining without saying something to offend her (ILs are our only family living close by and we do ask for babysitting help occasionally). I saw MIL yesterday and she didn't ask me how I was and I know she thinks I'm making it up/exaggerating and that it's no worse than normal aches and pains she has.. big difference... I'm 37 she's 66....
So what I'm wondering.... does it really matter whether she believes or tries to understand how I feel? It's obviously bothering me as I'm pondering over it and I do wonder exactly what she thinks... I hate being thought of as a liar..... and I wo see if it would be helpful to DH if she understood (& maybe offered a little help occasionally).
How do you cope with differences in opinion on your condition??
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becslb
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i know EXACTLY where your coming from !!!! my mil is exactly the same and said i've just gotta get on with it , amongst other hurtful comments !!!! i felt like cryin and it really wound me up when i thought about it.
Now i never discuss or mention my illness / illnesses ( maybe Lupus too ) to her and although i am pleasent to her , i know i will never be the same with her as i used to be.
I have decided that its her opinion and i cant be responsible for it ! and am not wasting my energy trying to change it !
my family dont understant coz they can not see anything do not understand what is wrong , they do help me by doing my shopping and stuff for me im down to one day every two weeks the rest of the time i spend at home in my pj.s getting dressed is a taske and half, my daughters find it hard why i can not clean my home anyway im finding it hard to make people understand, have done and want to cry all the time am i alone with these feelings ???
Hi becsib - actually I am struggling with the same kind of issues. As you say it bothers me too when people try to say it is something we all get when we are older. My Mum is one of the people that dismisses my pain and fatigue as being an excuse for not being at work. One of my closest friends often says my tiredness is due to lack of activity. I want her to believe me and understand - but I am not sure that she will as she is one of those that doesn't think ME exists. I am planning to have lunch with her next week, so I am going to try and stand my ground with her and explain what it is like ... she seems to believe I can 'get over it' in my head and get better. Lots of people accept that I'm not well but expect me to get better and it will all be over. I guess a 'terminal' illness actually has an end point - but fibro is lifelong illness - perhaps like diabetes? I am going to 'hang' some of the symptoms on to other conditions that people are more familiar with - like the muscular changes that are similar to MS. I refer to it as a neuroendocrine disorder - and try explain some of the chemical and physical research evidence. it may bore them senseless, but once you have explained it you can do no more. If they don't believe you, then it is their error in judgement and we have to stop trying to change their mind. We particularly need to not get stressed about it. Lots of deep breathing and focus efforts to not take responsibility for their thoughts. You know the truth. Every other sufferer knows the truth. I am working on not being so worried about what everyone else thinks - but it is really hard. Good Luck.
How can you cope with people of those opinions being the way you are? I could never cope with people like that around me - they would upset me so much that I would not be able to have them around and would make this sure. I am originally from Madrid and we say "Better alone than in bad company". Somebody who should e the first one in supporting you ike your mom tells you that you are exagerating? making this up to avoid going to work??? I might have a strong temperament because I could never put up with that - I would have to get them out of my lilfe or as far as possible if I wanted to improve my health - being upset doesn't help at all. Big hug and a kiss, suzysparkle, I really feel for you xxx
I like that Suzie, your explanation of Fibro.... not heard that reverence. Will google that defination. I too find it upsetting when people brush you off as being a malingerer, or that it Fibro doesn't exist..... I makes you wish they could experience a day of it.....they'd soon see the light wouldn't they!
An achy Annette x
Ps love the choice of user name Suzie....very positive!
Hi guys, I know exactly what you're going through, especially Suzi, my mum doesn't really understand...or seem to want to understand what's going on. She does ask how I am but if I tell her she just dismisses it and then goes on to tell me how her diabetes has been lately!
As for explaining to people, I was told be a friend who has an illness similar to ours to look up something called the "Spoon Theory".
It's basically a blog written by a girl with lupus who tried to explain to her friend how she felt and how her illness affected her. She used spoons to represent her energy level for a day and took away one spoon for EVERY activity she had to do in a day, including, getting up, dressing, preparing breakfast, eating, etc.
If I can find the link I'll post it, but in the mean time, just google "spoon theory" and have a read. It had helped explain things in a way people can get their heads around!
Hi, thanks for replies. Larissa and Suzy - yes, I think I have to "let it go", I know how I feel and my hubby knows so I guess really, we are the most important in everyday life and I have to not worry about MILs opinions.
Jane - the spoon theory is good but I think the person you are explaining it to really has to believe when you explain you are ill. If its someone like my MIL who thinks you are making it up then they won't take it in as "obviously" it doesn't really apply as you are not really as ill as you make out.....
I get where you're coming from. I hope you can sort things out sometime in the future, I'm sure it's no picnic for you.
Take care of you xxxx
I do sympathise with everyone who has posted so far, this can be such a big problem during very hard times for us. I remember at the beginning when my hubby, my older children and my mother didn't understand how ill I had become, they thought I'd need a few days in bed and then be back to my cyclone self. No such luck. When my "illness" dragged on and on, I felt as if I should "snap out of it". As Becslb mentioned above, The Spoon Theory saved my sanity as I showed it to everyone, made sure they all read and understood it and said that that is exactly how I feel every day and sometimes worse! It really helped no end, The Spoon Theory is explained in very simple terms, it isn't filled with medical terminology to confuse anyone, it basically explains how well or how bad we are feeling in terms of pain and exhaustion by the number of spoons we feel we have at any particular time. Take a read if you aren't familiar with it by clicking on the link below. I would be very surprised if you didn't find it as incredibly helpful as myself and my family and friends did!
I read the spoon theory and my friend suggested that I make it a daily visible thing for my daughter. I use fridge magnets to represent the energy 'spoons' and have a blue side and red side of the fridge. I move a magnet from the blue (in credit) to the red side as I use up my energy. When my daughter comes home from school, I am trying to get her to visualise how much energy I've used up and what I have left, so that she can appreciate what she needs to contribute - as she is a teenager it is very challenging. As a single parent of a hormonal teen - the whole thing can be overwhelming. I am not sure if this is entirely working, because I never know how many units of energy to give myself each day. I often use up more than I have in reality and I'm never sure how to explain this bit......
• in reply to
thanks for posting this link - I may well pass it on to others who just don't seem to understand! Such a great explanation.
HI well yes it does matter as she is your family and she should be supportive of you and finding out all about not saying things like it is a dustbin illness thanks cery much sorry but that is a very negative attitiude isnt it bless you .
can your husband have a word if yoiusit him down with alkl the facyts etc or if you are close to mother in law why not take her to an appointment so she hears what is said etc
this is the time you neeed your family/friends and GP to help and support you not say things like that i just wonder if her attitude would be the same if it was her son who had fibro and not you
anyway rty to gret her mind out of the deep negative hole it is in maybe show her this blog so she knows it is not in our minds godd i wish it ere and perhaps then she will realise and be a bit more helpful and thoughtful and think before she says things like that
you take care and you are not alone love to you Diddle x
Thanks for more responses, it is helpful to read other peoples opinions and experiences.
Diddle - my ILs are urmm.. odd shall we say! DH is dyslexic and wasn't diagnosed till late teens despite the fact that MIL is a teacher, she and FIL just said he's too lazy, would rather watch tv etc than read - all common little signs that along with everything else... would have pinpointed that actually he was struggling and not lazy! There's also a lot of "little sister is the golden child"... I think if he has Fibro not me, then the response would actually be very similar.
In the case of MiL... she doesn't believe that I'm ill, she thinks I'm making it up/exaggerating so explaining the spoon theory wouldn't help... I feel that only works if the other person understands that you are unwell but doesn't understand the ins and outs iyswim? I think in need to bring it up with DH and see what he thinks... I guess if he doesn't care what she thinks then that is the answer. I just feel a little extra support would be helpful at times.. esp as DH does work away a lot?..
Hi, my Mum isnt interested in the fibro. When i found out last year i had it. My mum said so you have face ache. Then when my Son joined the gym she said i should. Id never move the nxt day if i did. The other week, she said my Aunt hoped i get better soon.
My mum has never cared. So when she next makes a comment. Im going to tell her to educate herself on the cond.
I have come to the point, where im not going to sit back, any more and put up with it.
Now if it was my brother, she would be different.
My brother has never asked how i am.
But my Husband & Son are so understanding with my condition. And so are my friends thank goodness.
So we all have each other on here, which is a god send.
Plz dont sit back and let family treat you like this. As it will drag you down.
This was on the Fibromyalgia Network Facebook page yesterday...I've printed it out to give to a few people who just can't understand...it is more difficult for those who have been healthy all of their lives to get it.Hope this helps! Lots of love, blessings, angels, and gentle hugs to you xoxo
By Marckolyn Dillon
FIBROMYALGIA
F is for the Finding we always have to do; we’ve found our keys again, but now where is my shoe?
I is for the Impact on our family and friends; we’re so grateful to them for a love that never ends.
B is for the Breaks, we must take a lot each day; it’s hard for us to work or watch our children play.
R is for the Restless sleep that plagues us every night; we toss, we turn, we hurt, we twitch and never lay just right.
O is for the Occupation that we may have had and lost; or fear we’ll never get to try because of fibrofog.
M is for the Memory we all so desperately miss; we didn’t mean to miss your party, our memories, it slipped.
Y is for the Yelling the pain makes us want to do; but we can’t, we must compose, it’s not likely that we’re two.
A is for the Apathy that we all know too well; our favorite hobbies don’t amuse us, the equipment we should sell.
L is for our Lives, the quality is diminished; we can’t do what we once did, so many things unfinished.
G is for the “Gazillion” pills that we hate to take; they cost a lot, they make us sick, our pain doesn’t even break.
I is for the Ignorance that people, even doctors, show; our illness is invisible, the symptoms come and go.
A is for the Anger that we no longer feel; we’re taking back our lives from an illness that is real!
There is another called the Spoon Theory that was helpful as well...
There are posters, t-shirts etc and many other things explaining The Spoon Theory on this site if anyone is interested. Sometimes it's easier for people to understand with a poster as opposed to pages of typewritten words. The site is the same one with The Spoon Theory on as detailed above in my earlier post.
I have a poster with The Spoon Theory on and also a mug for my tea! I bombarded my family (hubby, two sons, one daughter and my mum!) with it and thankfully it worked and they all have a great understanding of how I feel and how many spoons I've used and how few I had to start with. It's a fantastic way of explaining how we lead our everyday lives.
HAS ANYONE BEEN ON THE FIBROMYALGIA FORUM? GIVE IT A LOOK ON THERE IS A SCRIPT WRITTEN BY A SUFFERER CALLED FOR NON BELIEVERS. I PRINTED IT OUT AND KEEP IT IN MY PURSE AND I DO GET PEOPLE TO READ IT. IT HAS WORKED WITH SOME PEOPLE INCLUDING MY HUBBY AND CHILDREN
I'm sorry I could'nt resist saying to her "I'm sorry!, please read up on the disease before make any decisions it would be a great help to me, and if you still don't understand it's complexities and the effect it has on me, please don't mention it to me again because your negative feedback could hamper my dealing with this illness", and say it smiling to her with your arms folded, and walk away from her then, and if she says anything like it again just say "Whatever!, now what's for dinner" or whatever else you think of, or "You do know all about it don't you, hmmm?" and then change the subject, that's what I would do anyway. Been there I'm afraid a long time ago, but been there.
I've only read all the rest of the posts, someone will think I was copying, but just goes to show we all have the same ideas and yes I'd love to get a bit posters ( or millions of them) and put them up all over the house xx
Brillinat posts by the way xxx gentle hugs to you all xxx
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