A little support would go a long way

Hi my name is Wendy I've had fibro now for 19 years ,I've managed to work for some of that time although I have my ups and downs .I lost my mother two years ago and since then my fibromyalgia just seems to be getting worse .I worked up until April of this year but now I'm so tired and in so much pain I can't do any more. I also have problems with my discs in my spine I'm going to have a steroid epidural on Friday so hopefully that will help with my pain in my back. My husband though I have explained it in great detail to him doesn't understand my condition and I feel that I don't get the support from him that I would like he just seems to put me down all the time and still expects me to work He just says to me are you tired do you want a little sleepy and to be quite honest I've had enough. Does anyone else has problems with family members or the other half not giving them the support they require?

19 Replies

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  • Oh Wendy, you aren't being looked after like an adult at all are you? If I was spoken to like that I also would not be happy! Condescending remarks can be very hurtful.

    You didn't say whether you have claimed PIP? If you were to be successful you could afford to reduce your hours a bit!

    I would also try to talk to your husband a d tell him how he's ma!ing you feel ask him to think how he would feel in your place?

    I hope things substantially improve for you sweetie. I had to divorce mine for that to happen. Hopefully it won't come to that for you

    Gentle hugs

    Jan x

  • Thanks Jan, I saw the specialist a few weeks ago & he told me I'm not fit to work. I have applied for PIP, about 2 months ago, still waiting to hear from them. X

  • Hello Wendyid,

    We have had others posting about family members not understanding so we do understand how you feel. There are a few things you may like to consider, you can download & print our factsheets for your family to read (link below) & also you could email us for flyers about Fibro using info@fibroaction.org

    fibroaction-public.sharepoi...

    There are also other articles online which may help you to explain, like the a) Spoon Theory or b) 'A letter to the healthy world from the land of chronic pain & fatigue'

    a) butyoudontlooksick.com/arti...

    b) healthunlocked.com/fibroact...

    Families & Fibro have been discussed quite often on the community and it is difficult to comment on others personal relationships, however the following links talk about how members of the family in general may feel when someone they love is diagnosed with Fibro & mentions how it can affect relationships;

    healthunlocked.com/fibroact...

    healthunlocked.com/fibroact...

    Some people talk of both the person with Fibro & family members going through stages towards acceptance, the five stages are denial, anger, bargaining, depression and acceptance. It is thought people move through this stages but in their own time. So, each person could be in different stages at any one time. As we are discussing this it might be possible that your partner is still in the denial stage therefore trying to ignore it and carry on as normal, possibly thinking if they carry on as normal it will all go away.

    Of course, I cannot speak for family members but it might be something to consider as they try to understand & accept your condition.

    I wondered can you consider sitting down together and discussing this through to try to gain understanding you have Fibro?

    i wish you all the best and hope this information has been of some help

    Best Wishes

    Emma ;)

    FibroAction Adminsitrator

  • Thank you so much

  • My pleasure, hope it helps :) We are here if you need to chat, usually one of the many members about. Keep Strong :)

  • Hi Wendy

    First of all I am really sorry about the loss of your mum ((Hug)).

    Im sorry you are having problems with your husband :( My husband was very good with me but recently seems to be getting sick of my health. Like I choose to be this way! He doesnt say anything but its implicit in what he doesnt say if that makes any sense? Just makes life even harder. I know I cant be much fun for him to live with but my health is not my fault.

    I dont really know what to say but just wanted you to know that you are not alone xxxx

  • Hi Claire, it seems we are two of a kind. I know what you are saying though. It would be nice if they didn't judge as they have no idea what we go through on a daily basis. I would like to have a support group near me but not sure if there is one. Take care x

  • Hi Wendyld

    I am so sorry to read of your problem, and I genuinely hope that you can find the answers that you so desperately desire and deserve. My wife has Primary Progressive MS, and so we are both very aware of each others illness and disability. Life can be hard for us, but we always manage.

    All my hopes and dreams for you

    Ken x

  • Thank you Ken, it's so nice to know that there are people that care. You & your wife are very lucky to have each other. I wish you both lots of happy times together.

    Wendy x

  • I too am carer to my Husband we keep each other going really. I cannot understand the negative behaviour you are experiencing from the one person you should be able to rely on. So sorry you are going through this. Best wishes. Lou xxx

  • Thanks Lou it's nice to know there are people that care x

  • Hello Wendyld,

    Sorry to hear about the way your husband is treating you. Sadly I know how it feels, my ex was the same when I was forced to stop working due to our friend Fibro. I just couldn't find a way to explain how Fibro effected every minute of every day. We lived together had gone to all the Dr's apt, seen all the specialists together but nothing seemed to make any difference and we split up a few months after I stopped working.

    The day I came across 'Letter to a Normal'. I sat in front of my PC and cried for over an hour because at last I knew I wasn't alone. I gave copies to everyone who I knew that were still around (Sadly that isn't many any more). But the ones that are understand and are very supportive.

    I still give copies of 'Letter to a Normal' and copies of the Spoon Theory to anyone new I meet, I hope the can help your husband to understand.

    Like you, my Mum also past away a 2 years ago my thoughts are with you.

    Hoping today finds you a little better than yesterday.

    Blessings Be

    Drew x

  • Thank you so much Drew x

  • So Sorry Sweetheart!!! I feel for you honey, I to have Fibromyalgia, bulging disk's in my back, OA, & RLS, now something I'm continually getting tested for, which I still have no answers for. I lost my husband in 2005 as he no longer wanted to be married to me. Then in 2007 my mom passed. It's so much harder when we don't have someone who understands how we are trying to cope. I pray that your back feels better, I had one of those injections and it made mine worse as I went right back to work the next day. Try to take it easy for awhile and don't over due it honey. We are all here for you and if you need a shoulder you feel free to message me sweetheart!!! Been there and know how you feel!!! Hoping you feel better!!! Hang in there Sweetheart!!! xxxx Mitzi

  • Thank you Mitzi you are very kind, I also have RLS. Combined with depression & IBS I feel pretty rubbish. I try to be positive. I have an appt for another MRI on the 20th to see how my spine is doing. I have been told that I will probably need surgery at some point. I hope you are coping with your pain.

    Wendy xx

  • Hi Wendy so sorry about your loss xxxx I find it extremely hard to make people understand fibro pain and tiredness. It's so different, you have worked which is hard some days. My friend she's got it sorted, when she goes to the doctors she makes her husband go in with her, it's worked for her, he understands a lot more xxxxx

  • Thanks for your reply, I had my hospital appointment recently & my husband wouldn't come. Sometimes I feel he doesn't care at all. He won't read any information that I give him. I guess I'll just keep plodding on

  • Yes sort of me!! I have a wonderful kind other half but I know he definitely expects me to continue working even though there are days I can hardly get out of bed, wash etc and I only work 5 hours 3 mornings a week. I feel it's too much for me now. I'd feel terrible if it were the other way round but what can I say?

    We just have to get on with it.

    Have you got any other family, children etc what about a close friend that could talk to him?

  • I'm afraid his word is law, no one else has the right to an opinion. I try to be patient with him but I struggle. Me giving up work was taken out of my hands as it was just making me so sick. I'm now having to rely on PIP payment so I hope I get it. Hopefully then things will be less stressful.

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