Family don't think you are sick

Discussion in 'Fibromyalgia Main Forum' started by debhun, Apr 25, 2007.

  1. debhun

    debhun New Member

    What can you do? They are not going to ever beleive us any.I give up. I guess I just need to stay out of the their lives. I got a email from daughter #3 and this is what she said.

    "Woman there is nothing wrong with you. You have fabricated all of these things in your head… and that is what is making you sick… Get out of the house, stop smoking, stop taking so much aspirin, stop playing the woe is me. You are the one that is making you sick. You need to realize this, or your just going to end up killing your self. Focus your mind on something else besides sickness…"

    So to vent but it just hurt to know what they really think.

  2. Mini4Me

    Mini4Me New Member

    Sorry your daughter is so clueless concerning your illness. Has she read anything or spoken to any docs about fibro? Or do you have CFS or both?

    There's plenty of info out there. Sounds like she needs to be enlightened.

    Perhaps you should just let her go, and never talk about your illness with her.

    Hope it all works out.
  3. melindami

    melindami New Member

    I know what you mean... My husband tells me that I am in control of this condition if I continue to stay in bed I'm going to get worse.. I tell him I exercise when I can but having really bad week.. Pain in neck really bad, dizziness majorly and nausea.. I had trouble at grocery almost fainted.. He got mad when he asked me to go find a special calculator.. When I told him I would only go to one store... He saud forget every time he asks me to do something it's a big deal why don't I ever support him... And went on about when he comes home from offshore he gets no break because he's got to take care of the house..

    He also asked me what am I going to do if i get bedridden or wheel chair bound if I don't get out of house and do stuff that is what will happen he says..

    I tell him he doesn't understand and explain my condtion again.. he says he does but he says this crap anyway... I'm venting too had bad day with hubbie on phone yesterday.. all because a stupid calculator which i did order off internet for him last night hoping to keep peace. Meanwhile my dad is in hospital.. pneumonia... At least my dad understands my pain he has bad hip in lots of pain... Mom took her a long time to get it but she is more supportive.. Sister has ms so she is supportive too... Grandma is 92 and has fibro with other condition so she gets it too.. Aunt cathy has problems so she gets it too...
    Aunt fran thinks it's unhealthy diet and saids herbs and vitamins cures all lol... Uncle ray says same thing.. So most of my family get it except for hubbie because I think it's a little selfishness.. Because he feels he does it all.. I guess I can understand why he acts so childish... I just got really bad few months ago.. I was still able to be very active in december.. I was still going to gym and shopping...
  4. debhun

    debhun New Member

    off many thing the spon and many other things about FM CFS. They look and throw them away. Handed my some to my mom and she said And. So you see why I am so down. My DH is great. he does alot me for me. The only one.Oh well I will have to think on this cause I really want her to understand. She lives in Fla so I don't see her much. thank you all for reading
  5. Taterdawg

    Taterdawg New Member

    So Angry!!!!! How can they be so insensitive and ignorant on your condition?

    I feel for you I really do. I hope things get better. Have you thought about seeking couseling? Maybe a family counselor. What you need is a good back-up/supporter/friend. I hope you find someone that understands and cares.

    Keep your head up darlin'
  6. tandy

    tandy New Member

    I'm so sorery your another one who deals with this bulls**t.
    I only wish people would'nt be so quick to judge.
    Especially those who are family & friends.

    I've heard my fair share of putdowns regarding this illness too. One was from a sister who told my lil 2 yr old nephew to "stay away from aunt Tracey,..she's contagious". (laughing)
    big joke huh?
    and another friend told me that if I focus on something other than being sick,... I'll get well.
    I've been told that just coming here,... to a support group,keeps me connected to this illness and I'll never get well.
    so,..wait?? if I stop visiting support groups for Fibro,...I'll feel great again!!??
    I wish it were that simple.
    Hopefully someday this disease will be more understood.
    untill then the critisizm is tough on us.
    We feel like hell and hafta feel like liars to boot!!
    its a no win situation~
    from someone who understands~
  7. Piperlilly

    Piperlilly New Member

    I've had this for 23 years. I haven't discussed my illness with anyone in my family except my husband b/c I know they don't and wouldn't understand. The only thing I've done is to give my mother some articles on cfs. No one says anything really "negative" to my face, but I know what they are thinking - my brother has said several times "are you working yet?" That really hurt b/c I thought he knew what type of person I am - a good, honest, hard working person who is really sick. I didn't put myself through law school, was working at the same time with 2 children in diapers and put myself into debt just to stay in bed all of my life. But that is what has happened to me. My son told me that my x-husband said I was lazy and I just didn't want to work. What has saved me all of these years is that I have a lot of confidence in myself and that I KNOW MYSELF and I have felt all of these years that I have had a virus or two of some kind. I know that I am sick and am trying to get well. No one else knows my body like I do -not my family, not my doctor, no one! So I try my best, try different things to get well and ignore anyone who doesn't have my best interest at heart.
  8. debhun

    debhun New Member

    Have to face all these people and know what they are thinking. My heart goes out to all of you all. Do you think it is cause we are not crying all the time. No one see me cry it do it when I am a lone. It is not like the "C" Word. Why can't they see us suffering in our faces. I know I try and put a smill on when I go out. I just don't know what to say or do any more. Maybe we can work on this.

  9. Suzan

    Suzan New Member

    That you had to have your daughter talk to you in such a flippant matter. No child should talk to her mother like that in my opinion. If it were my child...I would speak up and tell her that I would not tolerate such disrespect.

    I agree with the poster that said a book may help...or if you have a good doctor..maybe including your kids on a doctor visit sometime so they can hear it from a professional. We , who suffer, all understand how frustrating these 'invisible' illnesses are. I have FMS, and am 53yo. I cannot do 1/2 of what I used to do in my daily life. I am fortunate that my kids ( all grown) for the most part try to understand what I deal with. Although my daughter , too, thinks that I don't always do as much as I can to feel better!

    My position is that until someone figures out what causes this...we won't get much better! We can only manage symptoms for the most part. So we each have to find things that help, prescriptions, rest, eliminating stress, distancing ourselves from stressful people, healthy eating, moderate exercising and stretching. I don't believe that we should do or take anything that promises to cure there is no cure at this point in time. Why put more unknown and unproven things into our bodies that are already damaged???

    Anyway, breathe deeply..and try not to let these words have a harmful effect. They are coming from someone who truly doesn't understand what is wrong with you. I am not saying don't have a relationship with your child..but maybe it would be wise for you to not share much information with her about how you feel..and your medical choices. Just keep things as light and breezy as you can. MAYBE she is just scared for you..and doesn't know how to deal with her mom being sick??? I know it is hard for my kids to hear too much about what I go thru...because they cannot help me...and it is tough to see the woman you counted on for strength...not be able to get out of a chair..or walk across a room!

    Take care of you as best you can....and try to let go of your daughter's ignorance..maybe in time she will understand.
  10. debhun

    debhun New Member

    and I have 4 kids 3 girls and 1 boy the girls are 30 25 27 and son 18 and late year of school yea. any ways there was a little more to the email. here is more

    Daughter said:
    "And when Andrew does get out on his own and Moves away… I don’t want to hear one word that you have been calling him and tell him that he needs to take care of him momma cause she is dieing and no one loves her."

    I would let any one I was dyeing any ways. Why should I. I don't want to be a burden to any of my kids.

    I don't tell her any thing about me when I talk to her when I do talk to her which is not much. She gets it from her sisters I guess. But I don't say much to them other than I have a dr appt.

    Thanks a bunch evey one for you kind words
  11. lurkernomore

    lurkernomore New Member

    I want to send you big, soft, fibro hugs right now. This has to have cut you right through to your soul. I know my sons, ages 22 and 25, have days where they wonder where the mother they use to know went. But if they EVER came out and so blatantly let me know they didn't believe me at all I would be crushed!

    I am fifty, diagnosed with fibro some fourteen or fifteen years ago. I would never in a million years have elected to give up a job I loved, to sit at home where the phone rarley rings, with no personal income and no social contact whatsoever. Who in their right mind would?

    And here is the important thing to remember. We are not crazy, we are not lazy, we're sick! This nasty stuff does not care whether we have invested many years in education or have a fantastic career, or we are stay at home moms, trying every single day to raise the very best human beings that we can. When it strikes, it does not care what ruins it leaves our lives in.

    I think that the biggest damage this DD does is that once it has robbed us of a life we knew and loved, taken away all that we held dear...we sit and doubt ourselves and that is the very worst of it all. You know you're sick, your body knows it and your doctor knows it.

    It would be wonderful if others would even attempt to *get it* too, but the reality is, people will only get as much as what holds their interest. I have always believed that if something is important enough to someone (those who are in physical shape to do so) they will make it a priority to get that thing done. By that, I mean looking up an illness on the net, trying to educate themselves and at the very least, withold the judgements until they at least know a bit of what they are talking about.

    I'm sorry I went off on a rant here. It is just that you are so close to my own age and I have, whether consciously or subconsciusly, chosen isolation over returning to work or even socializing anymore because the misunderstanding and judgements just take too much out of me. I am tired of being a hermit in my own home. But I am also done with the snide remarks and comments and so I sit here. Heck of a way to live, isn't it? I pray for the day that a test is done so that we can all say "uh-huh-I told you so!" Oh yep, as juvenile as that may sound, I pray for that day to come, and sooner better than later!
  12. Engel

    Engel New Member

    I know what you are going through. My family is very unsympathetic and basically thoughtless. I have FMS & OA and just found out I have degenerative disc disease on top of that. I called my Dad to tell him the results and he basically blew me off. OK. Fine.
  13. olivian

    olivian New Member

    I got so tired of emails and comments like "did you know most doctors have concluded that fibromyalgia is all in the head." this kind of thing all the time....Boundaries sounds like a good suggestion...thanks. and yes it is hard to share with anyone who doesn't understand...that's what keeps so many invisible.
  14. harmony21

    harmony21 New Member

    hi Guys, yes same here with the judment and advice, it makes it so difficult, have found over the last 8 months who and who not are my friends. With family though sometime your kids cant cope with the fact that mum is ill and cant do what she used to, they have looked at you as their tower of strenght and now the tables have turned somewhat. My three sons ignore the whole thing and also tell me its in my head, get focussed, yeah if only I could, get motivated my friends tell me.

    One lady in acoffee shop i go to told me to see her trainer cause he doesnt believe in meds etc and he will fic me with exercise, I got quite upset and asked her whther anything I had said in the past had got through to her brain, she no longer chats, oh well her loss.
    so you see besides the docs and medical staff, its friends and family as well thats why we hang to each other....
    God bless

  15. annaleeb

    annaleeb New Member

    I am sorry that you also are effected by family who doesn't seem to have a clue to what it's like to have fibro :( I have come across some very good letters for people (like your daughter) that helps so much in explaining this DD to others. just wish I could remember exacttly where I saw them, I am sure some one here can guide you to those couple threads I am speaking of. Then you can make copies to hand out to ones that have no clue!
    Please dont feel alone, and just know you will get support here. Thats why I come on this site every day since I found it.
  16. harmony21

    harmony21 New Member

    send a copy of these posts and let your fam and friends know that its real......not a fabrication or attention call....We shouldnt have to do it, to justify and sometimes I just give up and then i get into it trying to find a piece if interesting and heart wrenching item I can email to all i know on Fibro Awareness day, any suggestions????

    love n light

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