need some support

Discussion in 'Fibromyalgia Main Forum' started by forestglen, Aug 6, 2003.

  1. forestglen

    forestglen New Member

    hi... this is my first time logging on to an fm chat..i need some support from people who understand this illness....friends and family don't seem to really understand and at this point i don'nt expect them to... i am tired of the undercurrant when they do ask how i am.....i know they are rolling there eyes and exchange glances across the table etc....i'm just feeling so very discouraged this morning....if i had another illness i would'nt have to justify or prove my case... it's ridiculous and very isolating....any one else have similar experiences
  2. spmary

    spmary New Member

    Oh, yes..do I understand? I live in a small town where people don't understand anything they can't SEE. They understand heart attacks,cancer,because so many eople have those. I have a sister-in-law that says she never sympathises with anyone becaause it makes them worse! She is great at sending cards, and then promptly forgets to do anything else. If a friend dies, she never does anything else for the surviror. Thinks I am strange for doing anything like having them for dinner,etc. Even my family do not make any effort at helping, and still expect me to do everything as usual. I just ignore them and do what I can,and let the rest go. Fortunately, I have a sympathetic doctor. He doesn't know alot about this DD but says he is learning. I've had to learn to and thanks for this group I do ,and recieve alot of help and support.
    My husband has terrible arthritis. I try to help him all I can,but he doesn't seem to understand returning the favor. lol! So keep your chin up and do reserch and let these kind people on this site help you. I will pray for you...Love, Mary
  3. Mikie

    Mikie Moderator

    It's always sad when our families don't support us. If we had cancer, they would likely be rushing to our sides. What we have can make us feel as bad as though we have cancer, but we often have to suffer in isolation.

    I would level with them and tell them you see their glances and eye rolling and how heartbreaking it is for you at this time when you need their love and support. If that doesn't do it, you may have to just forget getting any support from them and go on with your life. It's really sad when strangers are more understanding than one's own family.

    They are in denial and will cling to the denial with all their might. Living in denial is living a fear-based life because illness could happen to them if it could happen to you. The fact that it's an invisible illness just adds fuel to the fire.

    In any case, yes, there are people here who understand and know how you feel. Welcome aboard.

    Love, Mikie
  4. pammy52

    pammy52 New Member

    I just became a family member here in April.
    Medically diagnosed this past winter after 20+ yrs.
    Self diagnosed 10 yrs. ago.
    Very few 'understanding people' in my life.
    Because we look 'well' most of the time they think I am exaggerating the pain. I tend to look as tired as I feel 70% of the time
    so that is the only thing that my friends and most of my family can relate to.
    Mostly get all sorts of suggestions for sleep and then stories of how they had a night or two of horrible sleep and just had to go to bed early for a night cause they were so tired.
    They cant possibly comprehend what it is like to have yrs.
    of nights of waking up every 1-2 hrs., not being able to fall asleep and even when you finally sleep for a decent stretch you feel as if you never slept at all.
    I finally have a great SO in my life who has taken the time to try and understand. That alone is such a benefit. 2 of my children also understand.
    I hope you find someone who tries to understand.
    You will find great support and info here. Share the info
    with someone you feel is open to trying to understand.
    Pammy
  5. lease79

    lease79 New Member

    send you a ~*WARM WELCOME*~ forestglen.
    I have 4 small children, so I kinda flit to & from the board from time to time ;)
    I know exactly where you are coming from, & I think some of the other wonderful people around here have explained the alienation that we all feel perfectly.
    We have a disease that is utterly debilitating, but because we 'look' fine, others assume that there is nothing actually wrong with us.
    I actually don't talk to anyone about it anymore but my husband, as he is the only one who truly see's what I am going through. Oh & my extended family here, who have helped me through the rougher times :)

    Lease
  6. Lana56

    Lana56 New Member

    Hi,
    I am glad you are here!Everyone will understand anything you feel on a good day as well as a bad day.One thing I have learned over the years of great suffering is that some family and friends can't understand no matter how much we long for that from them.All I can say is the best thing you can do is do what is why for YOU no matter what others think.You know the pain you live with and the emotional side of chronic illness.If some asks you how you are doing just say ok and leave it at that-they wouldn't even hear you if you tried to explain it anyway.If someone asks you to do something,simply say not today.When you need to talk about how you feel find the right person in your life that will understand when you almost don't have to explain everything.Be good to yourself and we are all here for you.Never feel alone! Lana56
  7. forestglen

    forestglen New Member

    hi...darkearth....thanks for your support...its was a great way to start the day....
  8. forestglen

    forestglen New Member

    hi mikie.....thanks for your support and understanding