Needing some support from my family

I've tired to inform my family with books , printed out papers from what people have put up on net, explained to everyone how I feel. No body has even bothered to read stuff. My boyfriend switches off now. I've only been diagnosed a month . I'm getting frustrated some what because everyone thinks I look fine. Am at a loss on how to exslplain . If they see you walking around its like they think your ok and that's that. I wake up in pain go to sleep exhausted and I know I'm not actually sleeping . I'm moving my kegs all through the night because they ache . My periods are just ,, well I feel like I need putting down. It's just unbelievable that nobody wants to read the litiurature I've asked them to. What's wrong with my family and my boyfriend . Why , I have given them support for whatever I need the support myself now. I think I'm going to look for a support group . I kinda have I have everyone on here . X

7 Replies

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  • This is a very hard situation, which has been faced at different times by many, if not all, of the members here.

    Your family and friends may be in denial - it's scary for them too!

    You are right that you DO have support on here, and it may be that there is a local support group you can go to, so you don't need to feel alone.

    Maybe you need to give your family smaller pieces of information. Each day give them one extra piece of the puzzle. Or perhaps you could ask them to find out a specific thing. You are quite newly diagnosed, you may need more information yourself. If they are good with computers, you could ask them to look something up. This worked for me with my son, who now knows far more than he used to when I was first ill. I asked him to research a specific treatment for me ( an alternative therapy) which he was happy to do because it was a positive step (getting help). In the process he then became aware of the range and severity of symptoms, how common the illness is, and in fact that it is a 'real' illness, not just a cover up for depression! Now he is much more understanding, and I can really talk to him about how the illness affects me on different days.

    Hope this helps

    Kaz

    xx

  • hey i have been diagnosed now for 5 yrs and my family still believe that nothing is wrong with me and i use the illness to my advantage my husband of 24 yrs who is a qualified intensive care nurse never accepted my illness even tho he came to see the gp with me and had it confirmed from gp needless to say im now in the process of getting a devorce and my eldest children have turned their backs on me i now get support from my friends and a support group that im part of i strongly advise that you find out about a local group that you can join i have found their support invaluble if i had not got these ppl i would have found it so easy to end it all i still get times when i feel suicidle but my friends are there and you need support from someone the group im in did an meeting where you could invite family members and it helped them to understand hope things work out for you hun i wouldnt want things to go as far as they have for me love and gentle hugs to you

    lyn xxx

  • Oh this sounds familiar to me, I too have the same problem with my husband. I took a story off this site a week ago and emailed it to him, with the title... "This may explain y i am like i am"it was called "my fibro story" Ithought it was spot on. I couldnt have wrote it better myself, all he said was "oh thats what my physio told me i had"

    I could have slapped him silly, but my husband is known to be a "me me me " person. So i dont know why i bothered. Its so demoralising when even your closest dont take any notice, i have found more support from this site than my husband. So you are not alone, we have an invisable illness, what hope do we have if even r family think we are fakes. I just dont understand why anyone would be so miserable, keep trailing through to hospital appointments, scary MRI tests, blood tests and all the other crap we go through.

    Ive just been refered to ME clinic and i'm dragging him with me whn i get my appointment maybe it will sink in then. "I'm hoping so anyway, Im not holding my breath. But you keep your chin up, I know its hard to be possitive, but its all we can do.

    Big Hug

    X shelley

  • hi there fellow fibromites, I came across this quote the other day which just about sums it all up for me.

    "for people that understand no explanation is necessary, for people that don't understand no explanation is possible"

    unfortunately, apart from we the sufferers who fully understand, I find that most others fit into the don't understand category including doctors ,friends and family members(and the benefits people ).

    TK XX

  • Hi,

    I know exactly how you feel, I was diagnosed last June and my dad still thinks im a hypercondriac.

    I have tried to show him information but I have now gave up.

    Speak to your friends, I have found most of my friends are very understanding once they have read up on the disablility.

    Hope this helps

    ((((Hugs))))

  • Thanks everyone,, not alone , it's great knowing people understand, that's it really getting some understanding although I don't want people to feel like me. In the area that people around that you love just Dnt seem to be bothered. It's funny tho they want so much from me and I want so little. I push myself just to do the day to day things and am exhausted . Wish I had a miricle pill. I've just been told I can't have amatriptaline because I'm on beaterblockers ; that's another blow because I knew it would give me a lot if relief . So it's codeine at the mo. I feeling a but low and not just for myself for everyone out there suffering . Why can't people you love and help do much , want to know. I have a sick friend and I've done so much research because I can't stand seeing her alone in what she going through. Yet my lived ones are to busy with themselves . Strange isn't it. Thankyou everyone your messages are such a help. X x BIG HUGZ X x

  • Hello Jjojay, if you click on the link below it will take you to our Support Group Directory, hopefully you will find a support group near you.

    fibroaction.org/Pages/Suppo...

    It isn't unusual to find that our families and partners don't understand us having Fibromyalgia, they very often themselves experience denial and increased stress. They simply can't handle the change in you, communications break down because they feel they can't talk to you about it, they just want it all to go away. They ignore the situation instead of tackling it, this is their own personal coping mechanism.

    I wondered could this be a possibility in your relationship with your boyfriend and family too? If you were all able to gain some support with this maybe this would help the situation ?

    The local support group near you (if you have one) may be able to help support you both or maybe your partner and family may want to contact some organisations that help support families.

    You may find with the extra outside support helps the situation to improve

    I wish you all the best.

    Best wishes and hugs. xx

    Libs

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