families/SOs/friends of CFS loved ones?

Discussion in 'Fibromyalgia Main Forum' started by anniec345, May 6, 2006.

  1. anniec345

    anniec345 New Member

    My brother has had CFIDS since the late 80's. Living w/ someone who has CFIDS is a big education - and I know it's tough. I've read the posts about the pain of being cheated on, and my heart breaks. My brother has had to let some relationships go and not even begin to pursue others because he knew he couldn't sustain the relationship and the woman's life would suffer. I don't have CFS but I can't stand how invisible this whole illness has been and how it's hurt so many people. I wish my brother's life hadn't been hit by this Mack Truck of an illness, and I want to make the general public give respect to CFIDS sufferers and to those who care for you. I don't know what else I can do except to tell the human side of this illness - if only my parents had known my brother's suffering, they might have understood him before they died. How do you make relationships work? How do your SOs and children and relatives treat you? I bet a lot of them feel so guilty about feeling sick and tired of your CFIDS. Is this hard to talk about with them?
  2. 69mach1

    69mach1 New Member

    not gonna get into too many details, but ex cheated, ex used fibor as an excuse....

    anyways...i feel we can not try and try to make people accept us for who we are...

    if they make those rude comments...i had an ex bf...say what are you doing? i said reading the want ads? he said they don't have any jobs for people with fibromyalgia and carpal tunnle......well he was/is an alcoholic...

    you just need to learn to tune them out...and know who you are and what is wrong w/you...either they are going to get or they won't...

    jodie
  3. belly_acres

    belly_acres New Member

    My husband tries to understand as much as is humanly possible. He really doesn't pressure me in any way now - when I first started feeling ill with this dd it was a different story though. We talked lots, and were quiet about more often than we talked. Some resentment started building on both sides and we ended up talking with a counsellor - we had both agreed that we wanted to be together for life - she really helped get us over the grieving period. My hubbie finally really understood though when I told him that he and my daughters would be better off without me. He thought I was meaning suicide which I promised I would never do - no matter how bad things got and that said he thought about it a few days and came back and said that he wanted me in his life no matter what shape my body was in, and that he would help more and be more understanding - we developed a code word for when we are feeling stressed about the illness or just life in general and that is our signal to reconnect and talk. I'm not saying everyday is a cakewalk - there have been days when it feels like no one understands and I understand that it must be so hard for him to see me struggle to just get out of bed and he must wonder why he 'picked' me often - we talk about eventually and reassure each other daily that we love each other no matter what

    Cori