Husband say's he will not accept I have Lupus/Fibro!!

Discussion in 'Fibromyalgia Main Forum' started by Blond, Aug 28, 2003.

  1. Blond

    Blond New Member

    I'm ready to pull my hair out if I'm not fussin at him I'm cryin......I am so tired of cryin at 6:30 in tha morning!!!! I have to take him to work,then take my son to school,by the time I get home I can hardly get outta tha truck it Kills me now to drive,even a short distance,I am not goin to a Doc's appointment today becuz it is almost 25 miles away,I have to rest up an get ready to leave for a week again to go an take care of my grand-ma...this drive is 63 miles.....O00000 the pain!!!!!...I was feelin purtty good yesterday when I picked him up from work,so I tried to "Educate"him in how I usually feel,Didn't take long for him to make me feel bad,It may have been after he told me he does not accept me being sick or it was when After I had asked him not to get on the putor when he walked thru the door and do his boxing thing....Instead come to this an the Lupus message board an read.....Try an understand how I feel.....What did he do.....he read maybe 2 post then tried to do boxing an read about my condition at the same time.....He's gotta be Nuts!!!,I thought this was the most insensitive thing he could have done.......again,med's wearing off an jus exhausted from trying to explain.....I am now scared to death I will lose the man I love because of his own denial and refusel to understand....I can't imagine what a year from now will be like......Thanx AGAIN for listening,Blond
  2. tjlibby

    tjlibby New Member

    Have you thought about going to a support group with him. I think it helped my hubby...Good Luck..Teri
  3. moose1070

    moose1070 New Member

    I understand what you a going throug, my husband was hurt at work almost a year ago and almost died, I stayed with him 24 hours a day and did not leave his side for almost three months of hopital stay, I knew something was wrong with me long before anything happened to him but put it off as I always do, putting the family before myself but when DX this past March, he tells me it's all in my head!!! I stood by him and still am, in pain 24/7 working 40+ hours a week because he can not go back to work yet and he tells me it's in my head, I have gotten books sent to the house, tried to get him to read the message board and he tells me all I am is a pill junkie and make up my pain to get more pain pills!! All I can say is try and hang in there and what I have done is I just dont tell him anything any more, if he asks how im doing I lie and tel him im fine and I make all my doctor apointments during my lunch time so he dose not know. I know this is really bad advise but it takes the stress off. Good luck.
  4. Lana56

    Lana56 New Member

    Hi Blond,
    I am so sorry that your husband can't give you the understanding and support you need.Has he ever gone to a doctors app. with you??sometimes it is so hard to get through to men!You have enough to cope with and I am sure this gives you a lot of extra pressure.Have you tried asking him to talk even for a short time.When I need my husband to listen to what I have to say I tell him I need him and let him tell me when he can take that time.I once told him that i realize things are hard on him too.My heart aches for you since you need your husband to understand and don't get it.Then you have to go through a hard time and act as if there is nothing wrong.I work with a pain support group and have seen women trying to cope like you are.My husband has been there from the start in every way,but i am lucky.So many others deal with the same thing you are.We talk about ways to let the husbands know what we go through and what we need from them.Have to let them know we care about their needs-men need to hear that LOL! I hope you can find a way to get through to your husband.I am sure is is frustrating that he wanted to play a game on the computer and you needed him to read about your illness.Try to catch him for that when he does not have his mind set on doing something else.I wish I could tell him for you that you do have an illness and you need him-also that you love him.Don't know if I have been any help-I do know you are not alone.You take care of yourself and get some support where you know it will come from. Lana56
  5. wle

    wle New Member

    .............complain about my husband again. (Of course I will that is just wifely nature) But I am so sorry for you ladies. I get mad at my husband for such little things it seems compared to your problems. I will keep you in my prayers. Hugs to you. WLR
  6. dontlikeliver

    dontlikeliver New Member

    And I can understand what it's like becasuse I've been there. Until 2 years ago my husband said to me: "you just have to accept it: you are a hypochondriac - nothing wrong with that! You just need something to do to take your mind off it. OR "All you need is a good brisk walk". WE nearly did divorce over it, I wanted to leave regularly, except I didn't have the strength.

    Things are not perfect now, but he doesn't think I'm a hypochondriac anymore, recognizes when I'm doig too much and may trigger relapse, etc. And, even asks how I am sometimes.

    So, hopefully there will be a light at the end of the tunnel for you also.

    I don't know what made him come around. He didn't want to know anything about CFS. He didn't want to read literature, etc. But, I did leave a few basic, easy-to-read fact-sheet type things lying around where he has his breakfast early in the morning. I think slowly he got the picture.

    Perhaps leaving "stuff to read around" may help? Without saying anything about it. Or to say "it would mean a lot to me if you would read that when you get a chance"..
  7. Blond

    Blond New Member

    I really do appreciate the support all of you have show me.Over the last week I have posted more to this and the Lupus board than I have since I joined months ago......I have jus figured out I think I have been goin thru a Flare too.......You see I dunno,CUZ I FEEL BAD ALLLLL THE TIME!!!! it's so frustrating.But yes he has gone to appointments with me......he was with me when i was dx'ed with lupus,I felt so bad for him.For the 1st time in 9yrs he was speechless,i think he even melted into the chair for awhile,it was the 1st time i had ever heard him stutter.Then a couple of months later the rhemy I was sent to stepped in the room never reading my past tests or medical history.....1st thing outta his mouth"You don't have Lupus"....he checked me ,did the 18 points test of which I hit all 18,I hurt in places i didn't know about when he did whatever it was he did....Anyway my doctor an another both say they stand firm on their 1st dignoses that I do have Lupus an that it is causing the fibro/ he heard both dignoses an he knows,jus refuses to accept.Thats my story an I am in the process of putting together a booklet so to say for him and 7 other family member's.This is my last ditch effort to educate an try to make them understand what my life is like.Hugs to all of you,Blond
    [This Message was Edited on 08/29/2003]
  8. Mikie

    Mikie Moderator

    When serious illness strikes a family, not only the sick person, but other family members as well go through the grieving process, starting with denial. While the sick person may move on to anger and, finally, acceptance, family members may get stuck in denial. I had to laugh, not becaue your situation is funny, but because your husband thinks he has any control over any of this.

    Whether he accepts it or not, the illness is real and his refusal to accept it changes nothing. He must learn that life can take some strange and painful twists and turns and if you are both to survive, he must get his head out of whereever he has stuck it and get with the program. Family grief counseling can be of tremendous help. If he will not go, go by yourself.

    Your husband must understand that you need his love and support more now than ever. If he continues to withold it, you must decide if the relationship is worth saving or whether it is toxic to your healing. This level of stress can stand in the way of our healing. He needs to snap out of it and the sooner the better.

    I know this sounds pretty straight forward, but it's the truth. Read him this reply. It is generally fruitless to appeal over and over and try to convince our loved ones that we are really ill. We have to do what is best for us. That starts with knowing we are sick, learning what we need to do to achieve whatever healing is possible, and doing it. It's up to our family and friends to lead, follow, or get the hell out of the way. A man should understand this kind of talk. Approach him from a position of strength because he is approaching this out of fear. I know you are afraid too, but unfortunately, it will be up to you to take the lead and either he will follow or he won't. Good luck.

    Love, Mikie
  9. klutzo

    klutzo New Member

    Just one support group meeting should do it...I saw it happen over and over in my support group. Drag him there kicking and screaming if necessary. Call Fibro Network at 1-800-853-2929 to find the support group nearest you.

    I, too, will never complain about my husband again after reading some of these posts. I would not stay in such a relationship and be treated with no respect. I would rather be homeless on the street, but that is just me. It does not hurt to be prepared and have a plan. You should know that the majority of men whose wives become disabled divorce them; it's the way men are. They want to be taken care of, not the reverse. Apparently "In sickness and in health" is just something to say in he wedding ceremony for many of them. I was appalled when I saw the statistics on divorce and disability. Predictably, women with disabled husbands were much less likely to divorce, since we feel such a strong sense of responsibility and duty.
    It stinks, and I'd like to punch this guy in the nose for you, but since I can't, I'll just say, I'm so sorry.
  10. libra55

    libra55 New Member

    Yeah, we're definitely on the same page - since I replied to your last post my situation's getting worse by the day. Yesterday my husband of 17 years told me to "go to" (when I was on this fibro board) and today he referred to me as a "useless cripple". Right to my face. Nice, eh?

    My back and neck just hurt so bad tonite. I just did the grocery shopping. Not a morsel of food in the house. Filled the cart to overflowing. Drove home, put it all away. Asked my husband if he could take the kids to get their school supplies while I was gone. Well that didn't get done. He's flat on his back snoring. Go figure.

    What is so sad about this is that the rheumatologist has talked to him about this and he remains in denial.

    I am trying to prepare for some kind of a future for myself. I had thought of nursing but it would probably be too physically demanding. I am presently investigating paralegal courses. I know my marriage is headed for the sh***er and I am prepared to deal with that, I think, I do have a good attorney.

    Leave some written literature around the house on fibro and lupus (I think someone else suggested also). Keep trying; he might come around. Mine is just a stubborn as a mule.

    Gentle hugs to you,
  11. Mrs. B

    Mrs. B New Member

    are having such a difficult time. I will keep both of you in my prayers. Perhaps if you make the address to the website and any printed material you have available he will take the time to read it and deal with his denial while you are gone. I hope that things get better for you soon.

    God bless,
  12. Blond

    Blond New Member

    U ppl are jus wonderful for me an have made me truly realize that other's feel the same saddness I do.This week has not only been educating to me but fulfilling,I have learned alot about my diseases and myself.Michelle(Libra55) sweetheart,I jus could not imagine that being said to me by any-1 altho some purtty crappy thing have been said.I was told this week I didn't bring any money in tha house.But I have a mouth on me too an I can spit pure venom if pushed.Latley thou kept my mouth shut when i normally couldn't or wouldn't....not sure which,I have always been mouthy an would jump in a heartbeat!!!!!But now for tha most part I jus shut-up cuz nuttin good is gonna come outta my mouth when I'm mad or hurt.My family an close friends know.....Make me mad I will get over it....Hurt me an oooooo It's On!!!Inside I wanna jump an my body say's,,,,Huh "Wutcha think ur gonna go?lol.... Ya know if I could remember all the mean things he has said to me outta anger,I would prolly dislike him alot...An I am puttin that nicely,lol......But BrainFog has saved him an a few others,lol....Good luck to u Michelle,I will be sooooo happy to IM or e-mail U any time if ya jus need to Vent!!!!Many hugs,Blond
  13. jadibeler

    jadibeler New Member

    the word is SELFISH! With apologies to the gents here, who know first hand what we are talking about, men are basically selfish. Wifes exist to take care of them and their houses, children, needs, and bring in more money. Of course, there are some good ones out there, but in general that's thier outlook on marriage. Klutzo is right about men divorcing disabled wives - why? Because they can't take care of them anymore. Women, the caregivers of the world, stick by and do just that.

    These men do not want to believe. If they do, they're not going to let you know it. These men are natural bullies and that is what they are trying to do, bully you into at least acting well. As long as they are taken care of and don't have to do any work (around the house), that's all they care about. Obviously, they don't care about your feelings, much less your physical condition.

    I'm with Klutzo - start squirreling money away and making plans. They are not going to change. I hate to say that to you, you love the man, but believe me that love will sour and turn to resentment and even hate. Been there, believe me!!!

  14. Dara

    Dara New Member

    here, and you've been given some good advice. I also need to take some of that advice and apply it to myself. But, it is always so much easier to give advice when you're not walking in someone else's shoes. I should have left years ago. Now I'm 57, disabled, unable to work. Leaving is not as easy as it sounds. I just keep my symptoms and problems to myself, the only time I share them with anyone is on this board, and I don't think I do that very often anymore.

    Joanne gave you great advice, and she was so right. I think that as soon as a man (most of them anyway, not all) realizes that you can no longer "take care" of him and make his life easier by doing the housework, cooking, errands, etc., he doesn't think there's any reason to keep you around. My husband has never said that but he does still think I should be able to do the things I used to do, which I can't. Actually, with all my complaining here, I must admit that he has started getting better about things. He will even clear off the table after dinner, this would have been unheard of before. He was raised by a typical man from the "old school" who thought that housework and cooking were for women and real men didn't do those things.

    Sorry I got off on my own venting here. I hope that your husband will come around and something he reads or hears will help him to understand what you are going through.

  15. Fibrolady37

    Fibrolady37 New Member

    to hear of your problems i really am.
    You"re in my thoughts & prayers every day as is everyone on here & all other sites.
    I really hope my prayers help people because it makes me feel better knowing that im helping others.
    Very very gentle hugs to you (((((((((((((( sharon d
  16. tulip922s

    tulip922s New Member

    Hi Blond,

    I can sure relate to your story. I was married for 14 years and when I became totally bedridden with CFS/FM/Lupus, my husband said he no longer wanted to live with an "invalid". The stress he caused me each and everyday only set me back farther.

    At my lowest moment, I couldn't even roll over in bed by myself, I called my family who live 100 miles away and asked them to move me and my teenage daughter into my parents. Best thing I could have ever done, even though this dd took away a job I loved, my home and my marriage. My health improved, I am now getting 4 - 6 hours out of bed a day, my SSD went through, and I have meet a wonderful man who is totally supportive of what I'm going through and I am 46 years old.

    When he can, he takes me to the doctor especially if I have to go to the rhuemy which is an hour and half away. He rubs my legs when they hurt, brings me tea in bed, gets take out when I can't cook (okay so he's not perfect, can't even boil water), helps with giving my daughter rides, etc. etc. etc.

    My health has improved tremendously since leaving my toxic marriage. I'm certainly not telling you to leave your husband, but, the real fact of the matter is he is bringing you down farther.

    I have no real words of wisdom, only wanted to share my story. And ladies, if you think there is no way out,,,,think again. I did it in the worst face of adversity and found myself in a better world on the other side. Best of luck to all. Tulip

  17. libra55

    libra55 New Member

    This is encouraging to read the stories of those who have left toxic marriages. It gives me a little hope, which is what this board's all about. Blond, I get the business all the time about "you don't bring in any money" believe me, so I know what you're talking about. And one lady said she wished she had left sooner and now feels it's too late; it should never be too late. I'd go right now if I could. This is such a vicious circle of a disease; you stay because you can't afford to go but the longer you stay the sicker you get. It's just so frustrating.

    My doctors are so wonderful and considerate of me, even my dentist, I mean they all know my husband is a big bully and what I have to deal with. I am lucky to have such good doctors when I say I am in pain they take it seriously and I know many on this board are not so lucky as I read many complaints about doctors.

    I pray every day to get the strength to get out of this situation, and I say prayers for everyone on this board too.

  18. healing

    healing New Member

    I think most men are hardwired to fix things. When a man encounters something he can't fix -- especially involving the person most important to him -- then he can become stubborn, insensitive, angry and/or boorish.

    Also, men generally express grief differently than we do. Many men become withdrawn while they deal internally with these emotions. Think of all the grief we ourselves feel about what's going on with our bodies and lives. Is it not so much of a stretch to think a similar process is going on inside our husbands/parents/siblings/childrens'heads?

    Blond, have you had your husband accompany you to the doctor so he can hear from an "expert" about your condition? Most men -- and indeed many women -- won't accept what's posted on a website or chatline but will receive the very same info from a doc. Although my husband has always been relatively supportive, his visit with my rheumy has made a big difference in our household. He is now much more patient with my fatigue and more responsive to my requests for massages than he was before. So if you have not tried this, I think it may help.

    I can't help but think it will all get better.
  19. catgal

    catgal New Member

    Hi Blond~~I read the many responses to this post, and I was appalled to see so many women being abused because they're ill by the very men who are supposed to love, protect, and provide for them.

    However, as a therapist for 30 years, I have seen so many marriages hit the rocks when the woman becomes chronically ill. I've only seen a few devoted men willing to do whatever it took to take care of their wives and stand by them no matter what.

    In therapy, we call this type of physical or emotional abandonment The Lost Mommy Complex. Many men grow up with the total expectation [generally modeled by their Mothers] that their wives are going to take over where Mommy left off. Her main duties are to see to the man's comfort, anticipate his needs, love, honor, & obey, run errands, cook, clean, fetch & carry, raise a family, be beyond moral reproach, and these days to help supplement the income.

    But before I go any further, I want to say that all men are not like this. I am talking about certain types of men who grew up in male dominated homes, and this trait was conditioned into this particular type of man.

    This type of relationship is unequal, out of balance, and generally toxic to some degree. The "Man" sees himself as dominate and the "Woman" as subordinate. And yet while the man clings to his dominance, it is subconsciously understood by the male that the woman is the foundation of his Castle (home/homelife). She is the one who keeps the homelife secure, reinforces the Castle, creates the emotional security, keeps everything turning in greased grooves, nurtures the sick, does the caretaking, and fills in the voids--it is her primary duty to meet the needs of the dominate male and make the world safe for the 'little boy' within the dominate male. And in keeping with modern economics, she also shares the financial burden of the dominate male by contributing to the family income. All this on top of the historical "woman's work" of domestic chores of cleaning house, cooking, mending, washing, lovemaking, grocery shopping, running errands, child rearing, and maintaining all the elements of household duties that keep the Castle stable and firmly grounded in its sturdy foundation which is based on the woman's ability to hold the world on her shoulders like Atlas.

    What happens to the dominate male's conscious and unconscious expectations when the Woman becomes chronically ill and can no longer fulfill these multitide of duties?

    The man's foundation starts to crumble; he's lost his security; his Castle is no longer neat, clean, uncluttered, and he can't find anything. In his mind, he was just supposed to go out into the world, do his job, and return to the comfort of his Castle turning in greased grooves, with dinner on the table, his favorite shirt hanging in his closet, and the kids all taken care of. What the hell happened!? Where's the attention, the pampering, the being waited on, the lovemaking, and having all his needs met? Why does he have to take the kids to their activities, do the shopping, take over HER chores? He doesn't feel safe anymore. Things aren't getting done. The tolit's backed up, the laundry is piled, the dishes aren't clean--who's going to take care of all this? Where's the woman he married? She's been replaced by some lazy stranger who lays in bed all day, no longer contributes financially, and runs up medical bills. Fear sets in because he doesn't know what to do; has to take on all the financial responsibilies; the kids are all needing something, and then she tells him this isn't a cold; it isn't going away; it's chronic--forever. He didn't sign up for this. He feels betrayed. She can't have some mysterious disease that doesn't even show up on a test; she's just turned lazy, doesn't want to work, doesn't take care of him, doesn't do the things she used to, and he never even heard of fibromyalgia...and what the hell is chronic fatigue syndrome....where'd she get it?????

    He's no longer living the life he wanted. He no longer has the woman he married. She just takes pills and lays around. She's too tired to go and do anything anymore. People are asking him what's wrong with her, and he has no answer. What happened to the 'Good Ole Days' when all he had to do was go to work and come home? And so he starts taking his anger and frustration out on the woman...."YOU changed--I didn't; YOU changed our whole life--I didn't", and he can either change and start pulling up the slack by doing the added chores she used to do....or he can hide in selfish denial and blame, or become abusive, or stick it out in anger & resentment--or eventually leave.

    In all fairness, there are men whose love is strong enough, are willing to change and do whatever is necessary, become caretakers, and stay the course. But these men are usually more mature developmentally, have less of mommy's little boy in them, and can adapt, adjust, and accept.

    In the end, the woman has to decide what is best for her. Like Bek said, "Am I better with him or without him?"

    Some women live in fear that their man will eventually leave them.

    Some woman silently make a backup plan and start preparing just in case.

    Some woman leave before he leaves them.

    Some couples find a way to work it out--but in this case both people have to have a strong desire to stay together.

    Michelle...I personally can't imagine staying with a man who called me a "useless cripple". That is deliberate, vicious, verbal/emotional/psychological ABUSE. I am so sorry you are being treated this way. Is this love?

    We all deserve better. Even if we have to give it to ourselves. There are some things worse than being alone--and one of those is being abused.

    I wish all of us the best lives possible, and if your loved one isn't contributing to helping you to have the best life possible....then you might want to take a closer look at what you're chances are of ever having the best possible life. Some relationships can be far more toxic than any illness. Blessings to All, Carol.....

  20. jka

    jka New Member

    i was diagnosed with lupus 16 yrs ago-fibro 7yrs.with the lupus my husband had a hard time excepting the fact that i had it.i left littiture laying where he would find it and read it.i did the same with fibro.he's more suppotive now then he use to be.there are also some really good books out there on family members dealing with chronic illnesses.maybe them in the bathroom.that's always a good reading spot!
    best of luck to you-