Fibromyalgia Action UK
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Does anyone face a lack of understanding [or empathy] from their partner?

My partner doesn't understand or seem to want to know anything about Fibro. He insinuates it's all in my head - how do you handle this?

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Fortunately I don't but here is a link that might help him understand ....

butyoudontlooksick.com/wpre...

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Thanks VG just read your site and I makes very interesting reading, hopes it helps other people with the problem they have with their partners! Aisha x

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Thank you VG..... this is an interesting link - I enjoyed reading it. Unfortunately the 'written word' won't help [I've tried that route, without success].

Cheers - take care!

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Hello painbluecat, I had a similar problem with my brother he called me a hypochondriac and I was so upset that I went on the internet and printed off something which explained Fibro and how I felt and gave it to him, now he treats me so much better and always asks how I am! Maybe if your partner can see it in black and white he may believe you more! Thankfully my husband who isn't English believes me and is very understanding. Hope this helps, good luck. Love Aisha.x

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I was happy to read that you did manage to find a way to get through to your brother and, the fact that your husband is so understanding, is such a great help.

My hubby, also not English, doesn't believe me and has said rather a lot of hurtful things. It's the everyday attitude that really gets me upset.

x

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I would find it hard to regard such a person as a, 'partner'.

We live in an age where government, ably supported by the right wing press, have an agenda to demonize the poor, the unemployed, the sick and the disabled. We, the people on this forum, are to them, 'scroungers', 'shirkers', lazy', 'cheats', frauds', and criminals.

Many millions of people watch, listen to and read these lies and a truly stupid minority, take it as gospel.

Your, 'partner', sounds like one of these.

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Comber, you hit the nail on the head - I have never felt like a 'partner' and, yes, sadly he does appear to fall into that 'group'.

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Hello Paintbluecat,

I think this article in this thread may help you both if you could both read it together

fibroaction.healthunlocked....

Also consider showing your partner our website fibroaction.org for information & factsheets you can download then print too

I hope this helps

Emma :)

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Hi Emma,

Thank you for your helpful suggestions but I'm afraid this has not worked in the past...I really feel he doesn't WANT to understand. It is very wearying to deal with.

x

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Great links thank you so much, this will help me greatly with my children who by the way are grown up but think there is nothing wrong with me but i must say my partner is good and helps me when he can its my kids that are the problem xxx

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I wish you well with your children - thankfully your partner gives you the support you need.

Take care..xx

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Hi paintblucat, I can sympathise with you, my late husband was similar, but he didn't like to see e in pain, he was always thinking of things to do to help, hen I showed my appreciation his words were "well it's no fun living with someone that's always ill" so I wasn't sure if he was helping me or himself...don't worry what he or anyone else thinks you know how much pain u are in and that it's for real, it will only aggravate the condition ....gentle hugs ...Dee x

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Thank you Dee x

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Hi

I think the problem is iffy outlook ok people think you are okay, my mum,bless her is nearly blind, partially deaf, has severe RA and a myriad of other problems, but although in her 80's she has only a little grey hair and looks younger than she is. She is also very sharp mentally. So people assume she is fighting fit when really she feels like death warmed up. Unless we look really ill people just assume we are fine.

Also I think many of us carry on as best we can and solider on and don't give in and this can go against us. My. Hubby is great but my kids don't always appreciate how much pain I am in or how exhausted I am. Unfortunately familiarity can breed contempt.

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We are lumbered with this invisible illness and only those in a similar position can really understand. I know I'm not alone when I say everyone tells me I'm "looking well" [when I actually feel like death warmed up]!

The fact that I DO soldier on or complain is probably why he doesn't believe there is anything wrong. Yes, familiarity certainly does breed contempt.

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My God, how true. It is utterly impossible to describe being in tearing pain, every hour of every day, to someone who hasn't got this bloody swine of a disease/syndrome/problem.

You can see the look, 'Oh its that thing that the doctor can't find...', and the eyes glaze over.

Familiarity, as you say, breeds contempt.

And indifference. And a sneaking suspicion that you're not really ill, or at least not as bad as you say.

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My housemate is not sympathetic at all. He just keeps telling me to do things I know I can't do. He has said many times that he thinks I am putting it on. I have shown him letters and other things about FM but still he thinks I am making it up. I tried to kill myself last week (I can;t even get that right). I have no money because ESA are saying that my housemate and I are in a relationship. My Father died a few weeks ago and I have just been told by the social fund that they will not be helping with the costs. I have had enough of everything. I am seeing a psychiatrist and mental health nurse but just find talking about things makes me feel worse. I just want to fall asleep and not wake up. I have no money for food and no-one cares.

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Hi there,you really are going through a tough time,please remember you are important and equally valued here,I am glad to hear you are seeing a psychiatrist,would you consider getting in touch with the charity Mind they are excellent and could help get you in touch with organizations to help through your financial hardship,the salvation army are good in this area of work,if at any time you feel life is getting too much please pm me or anyone on here also the Samaritans,I have Bi polar as well as fibromyalgia,I understand your despair totally,hopefully your psychiatrist will appoint you a community support worker or social worker from the mental health team asap! I hope you get the support you so desperately need,I will be thinking of you so please when you're ready let me and all of us here know how things are going,Love and hugs sent your way,Della xxx

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Your words make me feel so sad - I am so sorry for your loss; I too have lost my Dad so I do understand.

Like della74, I am also glad you are seeing a psychiatrist but you definitely need to ensure he/she understands the depth of your despair and your bereavement. Please do talk to your healthcare professionals - I pray they give you the help you so badly need.

You are in our thoughts x

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Hollykarma, my heart goes out to you. I have been in your position many times years ago when I lived in shared house. Even know some of my family do not understand or think I am putting it on. I have been feeling suicidial myself so often in the past few months. In process of changing meds making it worse. Please, please speak to your local mental health team. Do not let them fob you off, if you are given a support worker, they should b able to help with other stuff. U r also grieving and your flatmate should b supporting you. I know it may not feel like it now, but one day your mental health will improve and that helps with FM. If ever u want to talk message me. Giving you Huge HUGS xxxx

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I have seen a psychiatrist and they want me to go onto higher meds. Spoke to my doctor and they refused until I had an ECG. Went a few days without any meds and nearly topped myself again. Had ECG and because of some sort of abnormality I am not allowed any higher meds. They explained I would have danger of kidney failure and heart problems. Trouble is with all the stress I am under I'm surprised I haven't had a heart attack. I have seen two different psychiatric nurses on two occasions. The second was extremely rude and complained because I wasn't able to talk to her. I have another appointment with psychiatrist on Tuesday. From what people have said to me already I will probably be admitted to hospital (psychiatric). This is what this government has done to me. My housemate is at their wits end and I feel bad that I'm putting them through all this which only makes me want to die even more. At least then I wouldn't hurt anyone anymore. Someone was supposed to phone me about my finances last Monday, still waiting. Not holding my breath. Three different NHS people have referred me to them and still no contact from them. To top it all I got a letter from ATOS to attend a medical assessment or I will lose my money (I'm not getting any money !!). What planet are they on ?

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my partner is a carer for someone else, he was my carer but when my money was dropped he as lost any pretense of caring for me. all he goes on about is when he retires he will get his pension credit. i am so fed up because i have a mobility car but i have asked him many times to take me out but all i get is what about the diesel, but i pay for it but he wants me to pay him to drive (he,s registered as my driver)he sits around all day i have had a form to see if dwl will look at my claim again, but i am under terrible pressure from my partner not filll them in as i could lose my benefits and my car, i don,t know what to do.

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Hi Sylvia,

I too have a form to fill in to ask for my claim to be looked at again as my condition has deteriorated over the last few months. I am still trying to work full time but can no longer get myself out of bed and showered without help. My 25 year old son is helping me in the short term but is not keen to carry on doing so. I was warned when I phoned to tell them of the changes that if they look at it again I could lose the high rate mobility and low rate care that I already get. I am terrified of losing this so can't make up my mind whether to go ahead or not. What really annoys me is that my next door neighbour has a mobility car and there is nothing wrong with her - she goes running, digs her garden, walks normally.

Lynne x

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So sad to read here what so many people are put through with this....

Chatrooms etc are useful but if I were you I would try finding a local fibro group and actually meeting up with someone and getting support in person. They may even be able to speak to your partner too.

My hubby has his good and bad days. Sometimes he gets fed up and lashes out (in words) because he's tired and had enough of looking after kids AND me. But meeting others who know about fibro and CFS definitely helps him understand that it is real. He now knows that I have to pace myself and can't overdo it or we'll ALL suffer!

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Yes, I can understand your hubby's frustration..... it IS a frustrating illness! Funny, my GP suggested I join a local fibro group [there's one about 20 miles away]. Unfortunately, my hubby has only negative feelings towards all such groups, so I know there's no way of either getting him to attend one or even taking them seriously.

Your hubby sounds a really nice person... it's good to hear such kindness and support is still around.

Thanks & regards...........

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