Discussion in 'Fibromyalgia Main Forum' started by babygirl44, Apr 1, 2006.

  1. babygirl44

    babygirl44 New Member

    I find that it is hard to deal with when family and friends don't understand or try to understand.

    When you can't get out of bed to day or clean house or want to go shopping.
    Are just walk in the park.
  2. claudiaw

    claudiaw New Member

    I have a wonderful husband who is understanding and a great help to me, right now i can't cook or clean or work, so he does it all.

    My father on the other hand really doesn't understand this condtion, even though i have sent info on it.
    he think's there must be something I am either doing wrong or I am not seeing the right doctor's.

    My in-law's think there must be something out there as well that I just have not tried yet.

    I have tried many different meds, I see TWO physical therapist's and go to a doctor that studied under a man that teaches other doctor's about FM!

    So they only one who get's it is my husband and 3 friend's of mine, one of which has CFS, so she really get's it.

    There is a printout called a letter to "normal's" on many FM sights ( this one included I think:) that you can give to family and friend's that might help them understand better.

    I know it can be lonely and frustrating, that's why this board is such a great place for support.:)

    Best wishes,
  3. Honestly I only have hubby because he has been sick for 6 years with this,But no one really believes me so I dont talk about it.I already know the negative feeling people have about people with fibro because I had to defend my hubby for so long with this illness.IEveryone looks at me and ask whats wrong, they know I am changing right before their eyes.I can tell you I didn't totally get it either till I got sick so its hard to blame other people so much.I feel almost normal today and I am at early stages of this so I still have good days .I am constanly having too tell people I am not mad I am just different.They see me being more serious and not happy Who would be happy feeling like crap all the time?? Ruthie
  4. Busyknitter2

    Busyknitter2 New Member

    I have a very supportive husband. He takes wonderful care of me and does everything humanly possile to care for me and to make sure that I do not get upset.
    My sons try to be supportive, my oldest is one of those who thinks that fibro is something the Drs. make up when they can not find out what is wrong with someone.
    My Dad does not have a clue. I have tried to explain things to him.
  5. cathugs

    cathugs New Member

    My husband DOES NOT under stand. I have had fibro for several years and really bad osteoarthritis long before that. Also I have neuropathy in my feet and legs,severe depression and have anxiety attacks.
    He thinks it's awful when I want to stay in bed some mornings.He just says ' if you would go to bed at night you could get up.' But some nights I have the fear of
    going to bed because I know that when I wake up I am going to face another day of pain.
    My sister is the only one who really understands
    because she is in worse shape than I am.
    I have two grown children ages 40 and 43. My son is the younger and he mostly understands because his Dr. told him that he thought my son has fibro also. My daughter knows I am in pain but, she doesn't really understand how
    bad it really is.

    ((((( cathugs)))))))))))) Ruth
  6. Chickybabe

    Chickybabe New Member

    Hi I was diagnosed with CFS one year ago after being ill for three and a half years. The illness is terrible but what has made it really hard is the family and many so called friends not understanding what is happening to me. I have had people laugh at me when I have explained what has been going on. At first I couldn't handle this at all! But as time has wore on I have come to understand that some people simply don't understand what you are going through therefore try to explain it away with their own ideas on it. Keep reminding yourself that often these people don't know what they are talking about and you do!!!

    On the other hand I have had loving friends and family (after researching it themselves and explaining it to them) that have come to understand this devastating illness is not laziness or something that is in my mind but a condition that I hve to live with 24/7. Don't give up hope with those people who don't understand. It took my father 4 years to get it. It was only after giving him material to read and explaining what was happening and him seeing the effects it had on my body that he came to realise how truly ill I am! Try and get your hands on any pamphlets explaining the ilness FM or CFS and keep a copy with you. Give it to people who want to understand.

    [This Message was Edited on 04/01/2006]
    [This Message was Edited on 04/01/2006]
  7. Tigger57

    Tigger57 New Member

    My brother and sister-in-law don't seem to understand at all. He doesn't get that I can't remember things anymore (which is insane because he can't remember anything) and both of them think I'm just lazy because my house is such a mess.

    I think they both also don't understand what it's like to work and then come home and you're in so much pain and so tired and swollen that you WISHED the truck had hit you.

    I've tried to have them read things, but they don't. Someone that my brother knows has fibro and she's told him how awful it is and he has sympathy for her, but I guess that's different.

  8. babygirl44

    babygirl44 New Member

    Thanks every one for the response but i fell that im have family that understands now you all thank you very much
  9. Cromwell

    Cromwell New Member

    Even nice families and friends don't get it.

    Prickles posted, "you can only change another person if they are in diapers"

    I think that says it all.

    You will have brighter days, but I do feel for those here who are bedridden or trapped in their bodies. Feel better.

    Love Anne C
  10. zion1971

    zion1971 New Member

    it is hard to say if they are pretending or not, but NO ONE in my family talks to me about my illness. my husband always says "well what do you expect them to say to you." "hi" "how are you doing today" "i was thinking about you..". anything but the total silence i get.

    my husband helps with all practical matters, and i am learning to be thankful. i just wish he would love me more and show more compassion. he comes off really cold at times. he doesn't discuss anything with me either.

    it is the elephant in the room that everyone ignores. after 7 years, i still have not learned how to get past that hurt.
  11. dinodebi

    dinodebi New Member

    Well, maybe not by some people. We're very suppportive since my mom, her sister, and I all have FM or CFS. So it's very difficult to think of it as something in our minds. On top of that, my aunt and dad are nurses and serch for classes and seminars, and anything else that will give them more info, which is then passed around. It's so common that we tease eachother about it more than anything else. we recently got together for teh holidays, adn i made a stress-filled request that people don't correct me when i say something wrong. i know what i was saying and they should just figure it out and move on. my mother was in full agreement. which, of course, meant that she and i were the brunt of all their jokes, but in a good way. 'you only tease the ones you love' friends are just as good, making sure i get out when i'm having a bad time, or just calling to see how i am..i'm better now because of them then i was 18mnths ago...
    at home i have a woderful doc that listends to what i have to say, adn we talk about options, and he'll run tsests taht i recommend and prescribe meds i want to try. and then we'll talk again about the outcome adn what might need to chagne.
    with my family, friends, and doc, i'll get thru this better than most.
  12. Adl123

    Adl123 New Member

    I'm very lucky. Several women in my family have CFIDS/FM, and so people seem to understand. At least they don't say anything. Of course, that is helped by the fact that they are not in the same town I live in.

    I have a cousin who feels that I should be able to cure myself. But then, he thinks he is going to live forever. Other than that, no one else expects me to heal myself.

    The problem with me is my friends. I have dropped many and others have dropped me. Yet I have found some who are supportive. It takes time.

    Good luck to you.
  13. lardsgirl

    lardsgirl New Member

    it's more like family doesn't get son, he just want the old me back..Me too!

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