Making friends understand

Discussion in 'Fibromyalgia Main Forum' started by gtpgirl, Mar 24, 2007.

  1. gtpgirl

    gtpgirl New Member

    Do any of you have suggestions on how to make someone understand how it is to live with fibro? My Mom, the one who really seemed to understand how I felt passed away last summer. My one 'close' friend doesn't seem to understand how bad 'phyically' I hurt. She just tells me to cut back on my medicine and keep pushing myself. She says I'll feel better after awhile. When I do force myself to do things, day after day, I collapse and am in such a flare I can't get out of bed for days. She'll stop by and say, sh'll just get up and get moving. She says, her back hurts and she's tired but she doesn't lie around all day. I have other friends that don't say much and sometimes me husband seems to believe me and then again not. How do you get people to understand???By the way I was diagnosed about 4 or 5 years ago.Thanks for your help. Julie
  2. findmind

    findmind New Member

    Dear one, please search "letter to normals" by Title, above.

    There have been many posts about this problem; maybe they will help you find ways that work for you, ok?

    There's always hope!
    findmind
  3. suzette1954

    suzette1954 New Member

    some to understand. My mother was my best friend and she has been gone for many yrs now. I still miss her every day. My sister has crohns so she is battling her own demons. Noone else even asks about me anymore and they sure wouldnt read something to explain it to them.

    I have one of those wonderful husbands who will always eat a bologna sandwich for supper if I cant fix something. I can only stand for minutes at a time so most cooking has come to a halt. But even he is not perfect and tells me to stop crying when I hurt soooo bad. I dont have any friends left in my world . They all went on with their lives. This board has been my Godsend! May God bless you and keep you.

    Suzette
  4. lilaclover30

    lilaclover30 New Member

    My hubby finally, after several years, understands. My daughter got mad at the word for a long, long time but now she hias read more about it. Two sons..............he know nothing about it and don't seem to want to learn, especially thye 50 yr old younger one.

    Friends.......I don't know who does or who doesn't. i just don't talk about it. That is hard to do too. IP guess I just come to all of you friends.

    Hang in there and write what you want whenever you want. We are all here.

    Gentle Hugs.

    Joan

  5. Cycie

    Cycie New Member

    Hi julie

    I don't bother trying anymore, I don't know if I talk in Swarhelie or something but all I have tried to make them understand just goes completely over their heads.
    I wonder if they don't understand OR they don't want to.

    I have been so frustrated trying at times, I have doubted myself and tried to do excerise or such, only to spend way too much time getting over it, I don't go out much anymore just keep to myself and family mostly,it's bad enuf when they don't understand.

    Take care & Gentle Hugs
    Cycie
  6. gtpgirl

    gtpgirl New Member

    Thank you all for your replies. I wish you all were right here so I could talk to you in person.I tried doing some searches before but must not have put in the right words.I will check out your suggestions tomorrow. I will go to bed tonight thinking of all you wonderful people who took time to write back to me. I hope we all can get some good rest tonight. Thanks again. Julie
  7. coolma

    coolma New Member

    Fibro puts you into a new life. People who haven't been there, cannot understand what we are feeling. Expecting them to isn't really fair. After many years of feeling pain about this subject, I understand now that they just cannot. And it is very hard for them to listen to our pains. I found people in a support group who were just as I was, and that saved me. We have remained lifetime friends, even if just by telephone. One, I E mail on a daily basis, she tells me her woes and I tell her mine. I think we just want some compassion from somewhere, and to feel validated in what we are suffering. I also learned that children can't stand to see their Mom sick, and can't stand to hear about it. I lost my daughter when I got sick - she moved away and couldn't listen to any of my pains. My son got so sick of hearing that I didn't feel well every day, it was really hard on him. I don't speak about it much to my husband. I remarried - and as our love grows, I have let him know a little more how I feel at certain times. It is hard for people to hear about illness. I think it is like a threat to them. I don't need to speak - he sees when I am unwell and have to rest. This forum is valuable for venting feelings. And so is a NEW good friend. I had to wish my old friends a fond "farewell" and know that sometime, life would hand them something hard to live in too eventually.
  8. gtpgirl

    gtpgirl New Member

    Coolma, I think you are right, when someone calls to say hi, how are you doing?, They probably get tired of listening how you hurt soo. I think my Mom was the one who was there for me and truly wanted to know how I was. When I lost her I probably complained to much to my friend(s). It just bothers me when people think it's all in your head and you just need to push yourself more. I just think back to the time when I felt good, exercised everyday, worked O.T. and took care of the house. Yes, I'd be tired and sore at the end of the day, but it was different. Well, I know you guys know how it feels, and I'll print those letters today. Thanks for letting me vent. Julie
  9. Waynesrhythm

    Waynesrhythm Member

    Hi Julie,

    My condolences on losing your mother last year. I think coolma has articulated a graceful attitude we can consider for ourselves. (Thanks for posting coolma)

    Your post reminded me of an article I read several years ago by a woman with CFS whose grandmother back in the fifties developed what she now feels was her own CFS. She went from a remarkably active and involved woman (for her time) to being able to do very little. There was lots of speculation in the family as to what had happened, and some judgments as well.

    But her grandma apparently never lost her grace. She spent most of her time in front of the window, and if I remember correctly, used whatever spare energy she had to tend to her flower garden.

    I don't remember all the details of this article anymore, except that it was entitled Grandma's Grace, and left me with a feeling of having found a heroine.

    Wayne

    [This Message was Edited on 03/25/2007]
  10. macio33

    macio33 New Member

    to get people to understand how we feel.

    ive tried many times to explain to my hubby about it, but its difficult. i lost my mum 6 years ago, im sure she would have been the best person to talk to about it all but i have now found the perfect replacement (well almost perfect, can never really replace her :( ) my wonderful friends in the chat rooms. :)

    as people have suggested, the spoon theory is wonderful. but i dont think anyone can truly understand unless they have fibro.

    hugs to you all

    mac
    x
  11. Katchina

    Katchina New Member

    Hi

    I am glad you got such a good response to your request.

    I have personally given up trying to make people understand.

    My home carer, who sees me everyday, has also read "spoons" (which is very good indeed but written about someone who is far, far less disabled than I am) and she understands very well, so thats an enormous help to me.

    I cant stress how important it is to have someone around knows you are not crazy.

    But, just as an example, I had to dump one ignorant friend about six months ago; she had first met me when I was at college when I was in my remission.
    She is not a bad person, and she was understanding at first, she is a nurse, so she helped me to do the urine samples I needed for mercury and heavy metals testing at great smokies, she also read the results when they came back which were positive for high levels of mercury, lead, cadmium etc. (I have had all my amalgams replaced since then)
    It was also her who drove me to the hospital on the day when I saw the M.E. specialist, when he told me its 100%physical not a mental problem at all, that M.E is very real and its definitely not in my head; he also said I show no sign of depression or any other mental illnes; she heard all that and then she read the written stuff he gave me, and made sympathetic noises, but that was roughly 3 years ago.

    I think that people must suffer from compassion fatigue when you dont get better after a few years, because I am mostly housebound, but last year she did me a real big favour and offered to take me out for lunch one day, then despite me giving her my parking badge which permits me to park outside the establishment, she parked her car about 300 yards away from the restuarant.
    when she parked the car, I didnt even guess what she was up to, I thought the restuarant must be out of sight just around the corner, I didnt expect in my wildest dreams she was going to try to make me walk so far, after all -why ever would I have been given a parking badge by my doctor if I was ok to walk?
    then, when I was in terrible pain struggling to walk at a snails pace and breathlessly asking how much further, instead of apologising, she said " you can walk faster than that"
    I dont know why she said that, she hadnt even seen me trying to walk for at least five years!
    Like an idiot I kept the peace (I was much too busy trying to walk) when I should have punched her on the nose, I stayed pleasant but striaght after our quick lunch I made her go get the car and wait for me at the door of the restuarant and take me straight home; from start to finish I would say we were out for about 45 minutes or so.
    I got out of her car, just left her sitting in her car like the moron she is, do you know she didnt even ring me the next day to ask how I was let alone apologise?
    I was very ill afterwards of course because I am exercise intolerant, bedridden and very sick with "flu" for days, it took me at least a week to get back to my normal, rather low activity levels.
    She never mentioned it once, and although I havent called her since, she didnt take the hint, she has called about 3 times roughly two months apart since then, the first time she called I told her what had happened to me after her "treat", but she didnt apologise so I guess she didnt believe me.
    I tried to be patient, she had been a good friend once, but each time she called me, she talked to me just like I was a very silly geriatric patient, and many times she has suggested things she thinks i should do -that she knows I really am unable to do, so the last time she called, as soon as she started up with her bad attitude and stupid suggestions I told her "goodbye-have a nice life, but dont call me again".

    Most of the world is ignorant, but in my view thats their problem, its not mine, I cant change it so I have to just let them get on with it, instead I talk to people who have the same type of illness, and I support MERGE and RiME etc.

    Of all my old friends I used to know I have just one friend left, I dont see her often as she is busy and I am housebound more or less, and when I do we dont speak about my boring illness, but still, she is a good friend, I know if I needed her to be, she would be there for me.

    I guess the earlier poster is right, its high time to make some new friends, and I would definitely do that, if I was only well enough to go out to socialise.

    thank heaven for the internet
  12. fsprit

    fsprit New Member

    IN MY OWN EXPERIENCE THERE IS NO WAY U CAN MAKE ANYONE UNDERSTAND YOUR PAIN EVER UNLESS THEY HAVE EXPERIENCED IT THEMSELVES. MY MOM RESENTLY GOT DX WITH POLYMALGIA & RHEUMTICA. SHE NOW UNDERSTANDS THE PAIN I'VE BEEN GOING THRU NOW FOR 11 YRS. BUT IT IS WORSE NOW THEN IT'S EVER BEEEN. SO I PRAY ALOT & MAKE SURE I TAKE CARE OF ME. I WISH I HAD A BETTER ANSWER FOR U BUT I DON'T.