My family don't understand!!

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My family don't understand!!

Postby pkd1272 » Mon Jun 17, 2013 7:53 pm

Firstly sorry for what could be a long winge but I need to empty my head.

I printed off a sheet by Shazq 'one for the non-believers' to give to my Mum & Dad as they have no understanding at all about Fibromyalgia. They read the sheet, then went through the list saying "you don't have that", that doesn't happen to you, your pain is only in one place and so on. Left me feeling that they still had no understanding and almost felt like they didn't want to understand.

I found a different sheet for my brother & sister to read which explained my exact symptons better. My brother read it and gave it back to me and didn't say anything. I txt my sister after 2 weeks to see if she had read it. She said" it sounded awful, but Mum said my pain is only in one place so not so bad and its just a case of learning to live with it" She then joked that her Husband feels like it every morning. My pain is in both my hips, pelvis and lower back.

I have bouts of chronic fatigue which last 2 -3 day, I went to bed last night at 8pm, slept till 7.30am. I then had to sleep after lunch as I was so tired I couldn't stay awake. By tea time I was struggling to stay awake again.

My Husband then offered to finish off the dinner I had prepared as he could see how tired he was, he then made a joke about me using FMS to get out of the cooking. After my family not understanding or seeming to care this upset me so much. I thought he was the one person who did actually understand how hard it is to cope everyday.

I just feel so tired and fed up now. We are supposed to go away together for a big family weekend but now I feel that I don't want to go as no one will understand if Im tired or in pain and they will just say I'm making a fuss or trying to get attention.
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Re: My family don't understand!!

Postby lolo73 » Mon Jun 17, 2013 8:21 pm

I think a lot of us feel this way, people who know about our condition seem to find ways of avoiding showing any empathy. You will always be understood here x
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Re: My family don't understand!!

Postby Otter65 » Mon Jun 17, 2013 8:46 pm

Hi

Sounds like you need a :grouphug:

we all need to stick together and help each other some people are lucky enough to have understanding family and friends but I'm not sure they all really get what it is really like to live with FM day in day out :scream-1:

So at least here we know we can help an surport each other :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

:woot: :woot: :woot: :woot:
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Re: My family don't understand!!

Postby djclall » Mon Jun 17, 2013 9:22 pm

Hi darling

Firstly i would like to say hi :wave: :hugs: .

It's bad enough dealing with and adjusting your life because of fibro. But to then do battle trying to get your family to understand is such hard work. Both emotionally and physically. I have been diagnosed for nearly 2 years now but have had fibro symptoms for around 18 years. I am married with 3 children ages 6 10 and 18. My children have more of an understanding of fibro tahn my husband!!. I put it down to him working away all week and only coming home at the weekends but also think that it could be just ignorance. If you don't know about it or see it then it's not real. That kind of attitude if you know what i mean.

It is so very hard to explain to your loved ones how it is. I, like you, tried to get my OH to read the same sheet as you gave to your parents but he used the excuse "you know i am no good at reading". So i tried a different tactic. I sat him down and explained to him how the pain affects me and where. I told him what i can no longer do comfortable and what i can still manage albeit a lot slower and time consuming. It seems that when he comes home at weekends he bring his bad mood with him (he is a long distance lorry driver) if he has not had a particulary good week. That is when he has his blinkers on and sees or says nothing. But when he has a had a good week, that weekend he can't seem to do enough for me. I know that with uus fibro sufferers our pain/mood and ability varies day to day but that shouldn't be an excuse for the ones who are supposed to love and support us to be the same!!. I don't know, maybe it is just me that thinks that way

Now my children are a different thing altogether. They can't do enough for me. If i am doing something ie; washing up, cooking or general housework, they always tell me to stop if they see me in pain. Not that i let them see my pain. Or i try not to but some times it's unavoidable. I have a younger brother who again is very supportive. As long as he is avaliable he will come to appointments with me, take me shopping or just take me out with his wife to the countryside if he feels like i am getting depressed.

I think that the best way for your family to understand your condition better is if you sat down with them and explained how YOU really feel. To me it's like having a baby. Doesn't matter how many books/info you obtain nothing can prepare you than actually doing it day by day. Could that be an option with your family?. I don't think its a case of your family not seeming to care. I think it's more like they feel bad because they know that there is nothing they can do to help you. And they feel helpless. You are after all, family. Maybe your sister 'jokes' about it because she doesn't know what to say?. And your brother shrugs it off for the same reason. Your parents brought you into this world and now feel helpless to see their child in so much pain. After all, they didn't bring a child into this world to see them in constant pain as they got older. Again its better to point out from the sheet what you don't have rather than admit what you do. Maybe it would be an idea to have individual chats with each member of your family before your family weekend away?.

I hope you get sorted out with support soon darling. Until then, this is the place to come for a rant, chat or laugh!. :grouphug:
Take care and soft hugs for you. :hugs:
xx
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Re: My family don't understand!!

Postby Tunes » Mon Jun 17, 2013 10:16 pm

Lol. That sounds like my world. Ive had family like that since my diagnosis 5 yrs ago. Doesnt matter how often you try and explain to them. Becouse they cant see it it doesnt exist so i dont say anything anymore cos it always made me feel like i was constantly moaning at them all the time. It just wasnt worth it. So 99% of the time i just suffer in silence. I sympathise with you sooo much. Hope you have better luck than me. Fi gers crossed for you :-)
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Re: My family don't understand!!

Postby DeniseJ » Mon Jun 17, 2013 10:52 pm

It doesn't matter what they think, you know how you feel. I've been through the same, my family are not uncaring, but not living with it every day and being able to empathise they do forget. I just give gentle, subtle reminders every now and then. For a long time I felt a fraud and I was almost trying to justify my symptoms to myself as much as everyone else, although recently I just think hey, I'm doing my best and this is how it is and we have got to get on with it.
I am 51 and was diagnosed late last year with Fibromyalgia and Osteoarthritis of both knees, spine and elbow.
I just think I really am doing my best, I haven't given up and well life is very short.
Good luck, there are still good times ahead. xx
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Re: My family don't understand!!

Postby Flash » Mon Jun 17, 2013 11:56 pm

:grouphug: :grouphug: :grouphug: :grouphug: :flowers: :flowers: :flowers: :flowers: :flowers:

Just because we all need them!!

My family and so called friends are just as evasive. They can all banter on about how this hurts and they have that and it's so bad and then will say something like, "But you're alright aren't you.. Yes..." :pull-hair:

I have arthritis and been told I have hyper mobility syndrome too. I have written on here before about how those closest to us just don't get it. This is a common problem that it seems just won't go away.

I have put leaflets and write ups under noses but it still won't sink in.

But they might understand one day, apparently, miracles do happen... :waiting:

Take care all.
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Re: My family don't understand!!

Postby masonsbarms » Tue Jun 18, 2013 8:43 am

hi cant add much more but just wanted to say,

my hubby is realy good but he dose come out with things like your hubby did and i went mad at him one day

he said it was his way of copeing and trying to lighten things not meaning to upset me but i do think that comunication and humer are needed.

take care xx
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Re: My family don't understand!!

Postby LouLou » Tue Jun 18, 2013 9:39 am

Hi pkd

First of all I'd like to send you lots of these :hugs: :hugs: :hugs: as it sounds like you do need lots of them at the moment. I can't add much more to what has already been said, I just wanted to let you know I'm thinking of you.

FM can be such a lonely illness at times. I have a really supportive family and OH but I still get times where I can feel so alone in this as no one can really know what I feel, how the pain feels unless they have the same pain. Which is why this forum means a lot to me. Everyone on here can fully understand the pain and fatigue and I feel like it's my extended family lol.

When your hubby made that remark about getting out of cooking dinner, was there anyway he was just joking? My Oh says similar things like MB's but it's his way of making light of my illness, his way to make us laugh at the situation and in no way is he nasty about it at all, he does it to cheer me up. So I'm just wondering if your Hubby could have been joking? You say he was really understanding before so that's why I'm thinking this? I do understand why something like that can upset you though.

Take Care and just remember you have us on here

xxx
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Re: My family don't understand!!

Postby E-Bunny » Tue Jun 18, 2013 10:34 am

Hi,

I totally understand where you are coming from !

In July last year I was diagnosed with Epilepsy, but I dont have Tonic Clonics ( The type you see on tv ) I have partials which pretty much means I switch off, regardless of what i am doing.. yet sometimes my body will carry on regardless !! ( Got me into alot of trouble when I walked straight out in front of a lorry o.O ), I have also been arrested twice for D&D in public when i have been post Ictal ( the stage after a siezure ).

I told my family about this, gave them as much info as possible, and yet still the ignorence they show towards this disability is staggering !

I wont be telling them about my Fibro... It's another disability they cannot see and so will be completly ignorent, and dismissfull as the are about my E.. Lukily i dont see them much, other than forums I have no support at all !

I am a single mum with 2 kids and still working 38 hours a week in a demanding job, my son is 11, my daughter will be 13 on thursday. My son is very understanding about my epilepsy, but worries about me to the point it is affecting his school life. I have been in to see his teacher as she phoned me with some concerns ( becoming withdrawn in calss etc.. ) I explained my situation and he now has more support.
My daughter is nothing but stress !! For a while she would even intentionally trigger my sz just because she could not get her own way !! I am just putting it down to hormones ( age n all ) and hopefully will settle down and be more understanding !!

I have not said anything to them about my Fibro till i fully understand it myself, to be diagnosed with 2 disabilitating conditions in a space of 11 months has been overwhelming, and still trying to come to terms with my E, so the Fibro dx just seems like another blow which I need to get my head around.

I have also suffered severe depression for 11 years ( started as post natal when my son was born and just went downhill from there ) yet another thing my family have no patience to take time to learn about and understand !! Apparently I should just cheer up and get on with things !! But this also slows my ability to cope and deal with these new dx's.. Im just hoping that this doesnt drive me back to rock bottom =(
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Re: My family don't understand!!

Postby FluppyPuffy » Tue Jun 18, 2013 11:17 am

Unfortunately when you're told you have something like FM, it can bring out the true colours of those around you, which can be very :yikes: :yikes: :yikes: :yikes: :yikes: :yikes: as well as eye opening :shock: :shock: :shock:

I had similar issues with some people who I had thought would just accept thing unconditionally due to the closeness of our relationship, but at the time it wasn't the case. If I said anything about how I felt, I was often asked "What is it that you're supposed to have??" and other such inane comments, which was soul destroying :cry: :cry: :cry: :cry: I'd done the info sheets, leaflets from docs, linkys to websites etc etc to try and get them to understand, even just a little about what I was living with, but as you've found, it made little, if any difference at the time.

This went on and on until I was pushed so low, right to the bottom in fact, that I took some very drastic, even foolish, action just to show how badly I was being affected with this, plus the effect their reactions were having on me. Altho it achieved it's goal, I paid an incredibly high price in myself for doing it, so I wouldn't recommend taking such a drastic approach :facepalm: :facepalm: :facepalm:

And it was then that I finally realised that, as much as we may try, there will always be some people who can't/won't accept that something like FM can exist, let alone affect someone they know. These days, if someone isn't prepared to try and understand, even a little, after I've tried to explain things to them, then I work on the basis that they aren't the sort of person I want to have in my life. With energies and capabilities being so low, using them to do things with those who are important to me is a far better thing to do than wasting them on someone who may not ever change their attitude to things.
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Re: My family don't understand!!

Postby FluppyPuffy » Tue Jun 18, 2013 11:54 am

E-Bunny wrote:I am a single mum with 2 kids and still working 38 hours a week in a demanding job, my son is 11, my daughter will be 13 on thursday. My son is very understanding about my epilepsy, but worries about me to the point it is affecting his school life. I have been in to see his teacher as she phoned me with some concerns ( becoming withdrawn in calss etc.. ) I explained my situation and he now has more support.
My daughter is nothing but stress !! For a while she would even intentionally trigger my sz just because she could not get her own way !! I am just putting it down to hormones ( age n all ) and hopefully will settle down and be more understanding !!

Tina, I know at the moment it seems all never~ending with your daughter, but things will start to improve between and for both of you. My :yikes: :yikes: :alien: :alien: teenager is a few years older than your daughter (he's currently studying for his A levels), and we have gone thru some turbulent times which are well documented on here :oops: :oops: :oops: :oops: :oops: :oops: :oops: They usually happen at times of additional stress such as exams, when I've been waiting to hear if I might have another problem/illness, or when those teenage hormones are raging thanks to puberty and growing up. Plus there is the fact that me and :yikes: :yikes: :alien: :alien: teenager are very very similar :facepalm: :facepalm: :facepalm:

It's taken time, but I'm now much more careful about which battles I pick to fight as trying to tackle every single one just wiped me out. Sometimes, all the angst and stropping about things comes from fears about how you are and what might be happening in the near future, and as they still don't know quite how to manage all these whirling and increasing emotions and thoughts that they have thanks to the changes they are going thru, both inside them as well as around them, it manifests itself as the Tazmanian Devil :yikes: :yikes: :yikes: :yikes: :yikes:

As she matures tho, and as you learn more about how your conditions affect you and (hopefully) start to get things back under your control, things will start to settle back down and you'll start to see some of those elements in her that others have told you she has, even tho you seriously wonder if they are talking about the same girl at times :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:
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Re: My family don't understand!!

Postby E-Bunny » Tue Jun 18, 2013 1:11 pm

Hi Fluffyuffy...

Completley understand where your coming from... Just sometimes it's hard to see past the anger and upset they cause, not to mention the stress making these conditions worse..

I did at one point give up.. Her behaviour and my spiraling back into deep depression after so many dx's in 11 months was too much... I dragged them out of the house, then hours called thier dad to come and take them ! This is by far something i am not proud of but i recognised the signs of how low i had become and after being sectioned once for trying to commit suicide after loosing 2 mums within 6 months of each other ( biological, and foster mum who was my rock, my friend and the only person who ever gave me time and listened ), i didnt want to go there again.. So made the hardset decision of my life to give my kids up to thier father.

The kids are now spending more and more time with me so hopefully will be back with me full time sooner rather than later, although i dont want to rush things too quickly !
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Re: My family don't understand!!

Postby pkd1272 » Tue Jun 18, 2013 1:37 pm

Thank you all so very much for your replies. It has meant so much for your time and understanding. My Husband was trying to make a joke it was just bad timing. He is normally so supportive and understanding.

I have decided to go on the family weekend. Why should my children miss out even more because of my pain. It is my family that have the problem not me. I will not allow them to make me feel embarrassed and that I should have to hide away. They need to accept that FSM is a real illness and that it is part of my life. If I am in pain they will have to see it and accept that I will rest and not be made to feel guilty for doing so. Ha, strong words. I just hope I can do it when it comes to it lol

E-bunny, I hope that things start to improve for you. I'm sorry that you are having such a bad time. Like me, there are always people on here that 'listen' and that will give you hope and support.
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Re: My family don't understand!!

Postby FluppyPuffy » Tue Jun 18, 2013 1:51 pm

Some of what happened previously when they went to live with their dad may be playing a part in how she is as well, fears that it might happen again or something :-? :-? :-? :-?

It is difficult to see thru the upset and anger, I've lost count of how many times I've thought and even said that there isn't anything positive about the relationship I have with :yikes: :yikes: :alien: :alien: teenager, but then, once I've been able to step back and regroup and calm down, there are little glimmers that start to shine thru, and as things become more settled, these glimmers become slowly more widespread and that bit brighter.

I don't think you gave up when you called their dad :grouphug: :grouphug: :grouphug: :grouphug: You've said it yourself about recognising where you had dropped down to, yet even with that blackness swirling around, the mum part of you made sure that your children were safe. I've done and said things that I'm not proud of, yet when others mention such times, I'm always told I'm my own worst critic as we do tend to be far harder on ourselves than we are on others in similar situations, so maybe there is something we could both learn and do from our experiences that could make things a little better for ourselves :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss:

It sounds like you're now getting things going in a better direction for both you and your kids :fingerscrossed: :fingerscrossed: Even with the things that have happened, and under all that angst and worry, they both know you love them and they love you, so you'll get there in your own good time and make some lovely memories along the way :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
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