Husband?partners refusal to accept I have fm

Discussion in 'Fibromyalgia Main Forum' started by ang63, Jan 16, 2003.

  1. ang63

    ang63 New Member

    Does anyones husband/partner have a mental block when it comes to FM. My husband refuses to accept that I can continue as before I was diagnosed.
    When I hurt or am so tired, he says to me dont give in to it...... and tells me a long list of things that need to be done for the day, while he is at work, he gets so fustrated when I forget most of them.
    He gets so mad when I come on this site because he thinks that I go worse the more I read about the symptoms of FM.
    I love him to pieces, but he doesnt realise that FM cannot be solved with a tablet etc.
    Does this sound familar to anyone.

    God Bless
    Angx
  2. TxMissy

    TxMissy New Member

    My husband refused to learn anything about this stuff and told me the same as yours is telling you. It got down to where I made him move out and told him we were getting a divorce since he could not cope with my health problems. I told him that by upsetting me and stressing me out over his behavior was making me worse and I didn't need that. I told him to get educated on the matter and be here to help me with this or leave me alone and let me fight it alone!

    He called me after day 2 and asked if I had the information for him to read, I said I got tons of it and he said that he would be by after work. Well, he read and read and read... asked a lot of questions and since has made a HUGE change in his attitude towards me. He now helps me when I am struggling along with something, washes dishes, picks up after himself (this is a really BIGGIE!!!) The one article that really opened his eyes was one that I got from here: The Theives of Many Lives (I think that is the name of it) He read that, which almost made him cry and said that I was lucky that I wasn't that lady. I looked at him and said "HELLO, where do you get that idea?" I told him "no I am not as bad of a state as she is, but I could very easily have wrote something as close as that! and that I am not far behind her!" I guess it made him realize what all he was ignoring.

    He now understands that by changing doctors and everything else that he could dream up, the facts still remain the same! I am very happy that he decided to stay with me and learn as much as possible and help me. Thru all of this we have learned how much we really love each other! But is was a rough road to truely find this out!

    I will pray for you and your hubbie. I hope that he will read more about your condition and learn all that he can. It would really be a big help to you, I know because we just went thru this a month ago.

    Many hugs and prayers for you!

    TxMissy
  3. Starla

    Starla New Member

    I've heard all that from my husband, but the frequency is getting farther apart. All you can do is try to leave printouts around for him to read and hopefully he will start understanding. I leave it around like I am reading it in places I know he will sit, and he does pick it up and at least glance at it. Put it in the bathroom for reading material!! Day by day mine understands and sympathizes more. On occassion, he loses it and spouts off hurtful words. These guys are hard headed, I think because they have always "depended" on us for just about everything and don't like it when we can't be like we use to be. They are just going to have to adjust aren't they, because we would cure ourselves if we could. This is not a choice to feel so bad and forget everything. You will have to toughen up to not be so sensitive to his hurtful words and let it roll off your back because it is going to continue for awhile until he gets it. Take care of yourself and don't listen to anyone with crude remarks. I told my husband he better watch out or this disease just might get him too. Then he will understand. There are a lot of us women on here that fight the battle of trying to make our husbands understand just what we are dealing with every day. You are definitely not alone. Some women here do have understanding mates and they are extremely fortunate. So when you need to vent. Just give us a post. We are here for you.

  4. jlouise

    jlouise New Member

    Dear Angx,
    First let me say that if he is judging you on what you can get accomplished, he is evidently just looking at your capacity for getting his needs taken care of. If he makes a list, he has no compassion for your health and your needs. I may sound critical of him, well, I am. However, it's not all bad. He probably married you when you had more energy, and could accomplish more. Now he sees you as some one that does much less. This is a two sided coin; he feels you should be able to function; he doesn't know what it's like to have this illness. The other side is that subconsciously, he misses the woman you were; in a way this is how he is dealing with the feelings he has about the situation. In essence, he is fearful of what may happen down the road if your illness continues, so it comes out in a way that he makes a list and hopes that you get something accomplished. When you don't get done what he feels you should, it further cements his fears. The best thing he can do is accept that this is not going away, though it may get better; especially if he works with you. You will be able to reserve some of your physical and emotional energy, and maybe even make your relationship stronger. I'm sure that if things were reversed, you would be right there working through this with him. He needs to look at you and your good qualities, not the illness. Unfortunately, my husband and I divorced 2 years after my diagnosis; he decided my best friend was better. He didn't feel he should have to take over any responsibilities of the house, and wrote me off as lazy. Now he's having to do most of the housework, and she does very little(she is healthy). My boyfriend is still learning about this illness, for the most part he is understanding. I believe if your husband accepts your illness and works with you, not against you, things will improve. BEST WISHES TO BOTH OF YOU....JL
  5. bre_ann

    bre_ann New Member

    I don't think my husband will ever believe I have fibro unless I get really sick with it (which, luckily, I haven't been) I started trying to figure out what was wrong with me through the internet before I was saw a rheumy. My mother mentioned fibro (I had never heard of it). I looked it up and couldn't believe it. Everything I was experiencing finally had a name. Unfortunately, I told my hubby about it and he thinks I'm just trying to find something wrong. After, seeing my rheumy for several months, all tests coming back negative, I had to practically force the dr. to bring up fibro. He was telling me he didn't know what was wrong, there was no arthritis, nothing. So, I said what else could it be?! So, he said it could be fibro and gave me some pamphlets on it. Since then, he's actually dx'd me with it. Again, unfortunately, I came home and told my husband I had to practically drag it out of the dr. So, I don't think he actually believes I have it and if he does, he thinks it's no biggy. He has never (to my knowledge) read one thing about it. Thankfully, my fibro doesn't get so bad it puts me in bed, although I had a back spasm so bad recently, it put me out for a day. I am thankful I have the board to vent my frustrations and ask questions and get support. Because I sure don't get it at home. And I don't think he likes it when I read the boards because he thinks I get "ideas" from them. Hah! Yeah, ya'll are puttin this pain in my body by me reading the posts!
  6. catgal

    catgal New Member

    Hello Angx~~It is a difficult, frustrating, and heartbreaking situation your husband has put you in. It is as though by his staying in denial that he can avoid acceptance, responsibility, and reality.

    However, was he a compassionate, understanding man before you were afflicted with this illness? The answer to that will give you a good indication of his capacity to change.

    As women are often the ones who hold the fort down, keep the homefires burning, and do all the work to maintain a home plus meet all of hubby's needs--any change in this status quo can truly be threatening to him. I know in my man's case, he was so used to me working, running all the errands, taking care of life's responsibilities & obligations, doing all the household chores, and taking care of all the problems that came up--that it made his life easy--all he did was go to work, come home to a nice dinner, prop his feet up, and didn't have to deal with any of the everyday living duties. No matter how exhausted I was or how much I ached--he was so satisfied with the way his life was that nothing was going to change that so he ignored my failing health.

    When the degenerative disc disease hit, and I was in extreme pain, bedriden, and couldn't function--he said unkind things to me. He didn't want to have to pull up the slack, run the errands, handle life's responsibilities, deal with obligations, or help with the housework. He was lazy and took his resentments out on me.

    I finally had enough and told him he could either go to my next doctor's visit and have it "officially" explained to him--or he could move out because his lack of concern and hurtful works were abusive, and I was not going to be abused by him. I put the ball in his court,and I knew whatever he ended up doing would give a good forcast of our future together.

    In the end, he "reluctantly" went to my next doctor's appointment, and the doctor explained my back problems to him, the pain it caused, the limitations, and that I could no longer be "expected" to carry the load for both of us. The doctor asked over & over if he had any questions, and he answered my mate's questions in language he could understand....man-to-man.

    After that, the verbal abuse stopped, but it took him some time to get off his lazy butt and start helping around the house and with life's responsibilities. He resented it for a while, and it took him some time to work it out in his own mind, but he is doing much better now. He discovered that his "payoff" was that I was more rested, felt better, was in a much better mood, did special little things for him to show him how much he was appreciated, and praized him and gave him more attention.

    It was an uphill struggle, but things got better with time and patience. The one thing I refused to put up with (and he knew it) was being verbally abused and put down. As to live a lifetime with that kind of man and that kind of behavior--I would rather live alone. Much less stressful, and I could do what I wanted to without being made to feel guilty, lazy, or belittled. I worked and earned the living too.

    I recognize that he misses the active, go-getter woman I used to be who made his life very easy. And, I told him I missed that woman too and grieved for the loss of her. But, there were still many things we could do together if he was wiling to "share" the load. But if he wasn't--then I was no longer the woman for him....and he was no longer the man for me. Change came slow, but he did change, and I took every opportunity to tell him what a wonderful job he was doing (even when I cringed at how sloppy he did the chores) and how much I appreciated it.

    Whatever you do--DO NOT allow him to belittle you, deny you, and make derogatory remarks about you. That's abuse!

    I'm a therapist, and I listen to women everyday who don't realize they are being "abused". They take it and take it until they are beaten down, have no self-esteem, and start believing that it is their fault. Do not buy into this. It's damaging to you holistically and terminal to the Spirit.

    Take care of yourself and expect to be treated with compassion, dignity, and respect. Best Wishes, Carol...
  7. clueless

    clueless New Member

    Men are strange creatures and I think sometimes react in anger because they don`t WANT to believe we feel as bad as we do. Some men don`t like to see pain in others. Especially those they love. They can be hard headed some times amd I am so sorry that yours is one of them. Hopefully something will open his eyes and he will realize how much you suffer and how very much you need his love, understanding and help. I`m sending my warm wishes!!!!
  8. mick

    mick New Member

    Angx, I am in the same boat. I also need advice. Jlouise, your post made me cry. You described pretty much everything that I feel. I have chronic fatigue syndrome and might also have fibro. (CFS officially diagnosed, fibro is just my own thinking) He knows that I have CFS and I have read him somethings I have found on the internet about it. When I found out I had CFS and read him the things I found, he told me how he would help me and would be supportive, but these days he hasn't been. Since my diagnosis I have hired a woman to help me twice a week by doing the laundry, dishes, cleaning floors, etc. She can only come for five hours each day, but she gets quite a bit of the important stuff done. But when he gets home he wonders why the house isn't shining, why our dining table still has bills and mail on it and why our couches have stuff on them that have been sitting for awhile. I also work out of my home and don't always have the time to tell the lady where things need to go, so I have her leave the dining table as it is as well as the things on the couch and that I will hopefully get to them on the weekend. He acts as if I'm just lazy and will tell me, "why don't you have time to do this stuff." I not only have CFS, but also have carpal tunnel syndrome, tenosynovitis (inflammation of the joints of my hands from typing at my job), a workers' comp case pending (and he does too), and recently a car accident in which I was rear-ended by a cement truck. I am in physical therapy three times a week and also have been having several drs appts. at the same time as well as work and take care of our two small children. I don't want what happened to Jlouise to happen to me and divorce after 7-1/2 years of marriage. Am I being too sensitive? Or do we need marital counseling? Please help. Everything right now is so overwhelming.
  9. LindaLoonyTunes

    LindaLoonyTunes New Member

    I copied this from Clouds Online:

    Ladies going through this on your own this may help your family and/or friends understand. When the wife started with the "I don't feel good, and my shoulder hurts, and my knees hurt, and my back hurts," I was a little skeptical at first and also noticed that I was starting to take on more of the every day chores. Trips to the store, taxing the kids here and there, etc, etc. I did this extra work no problem. I could see that she didn't feel good but did she really feel that bad. I kept saying this was all going to pass because all the tests were showing that nothing serious was going on with her and there was no large growth on the side of her face that we could see.

    Well of course it didn't stop and now she is starting to miss work and her RN hours started to drop (well you know). At this point I am still keeping it together but becoming very frustrated. Now I am thinking to myself “when is she going to start doing what she use to.”

    But it just gets worse and now she is missing out on a lot more of the kid's daily activities. What is going on? - nothing is what it used to be and everything is becoming more stressful and is really starting to wear me out.

    I love my wife! I just want it all to be the way it was, why can't she do what she did the day before!!!
    Why cant she remember anything, she forgets to mail the bills and forgets to pick up the kids would go to the store and not even bring back what she went for.
    Well now its time for me to take over everything all the bills and shopping everything. As a man I will say that my wife has always taken care of our finances for the last 19 years and did a very fine job, better than I am. Now I have to stress over all finances too and every time the kids need anything, she always says go talk to your dad, I cant make that decision. I don't feel good leave me alone.... Ok this is it, she has never done that to the kids before. We are now on a very fast downhill slide, I never know what is going to happen from one day to the next.

    OK, does any of this sound familiar? It's now time to think back to when everything was just the way we wanted it; what has changed and why.

    I stop and do some real soul searching, thinking, and a lot of praying.

    I think that somehow over the years I had let our marriage turn into a routine. You know what I mean, everyone has their own part and that was just the way it was. (Remember the daily goodbye and how was your day kiss's - are they still the same).

    The good old routine and when the wife became ill it changed that routine. When this all started I had ask myself did she really feel that bad. I didn't know - I was not sick. I was not in her shoes. Was I more worried about the changes in our lifestyle and ignoring the health changes in my wife? I am truly ashamed of myself, the answer was (YES).

    Is she still the beautiful, caring, and loving woman that I married, the same woman that had given birth to three beautiful baby girls and one very handsome son (YES). Is this the same wife and loving mother that would spend every extra bit of her time with our kids and that loved her job, gardening and oh yes shopping with the kids and walking the mall for hours (NO). This is not like the woman I fell in love with and she really is getting sicker by the day.

    Now what should I do?

    Do I continue to blindly ignore my wife's illness, all the pain and depression? Please don't get me wrong I love my wife and have been helping her a lot, but my stress and aggravation at times is very noticeable.

    I can only imagine what she was going through, not only was she getting sicker, but also I know that my frustration with her at times would make her feel like she was a burden. How is it that sometimes we can be so cold and heartless and not realize it.

    Should I just walk away from everything that I love so much because it is just too much to deal with? Well I don't believe that running away is even an option. But if I am not willing to make a lot of changes, then I should just leave. There is no need in making her more miserable than she already feels.

    Ladies, when it comes to a man trying to keep up with these rapid changes in health and lifestyle, well it's not easy. And I can honestly tell you that it can be very, very frustrating. Just too many changes. I can never plan to do anything like I use to. Life is becoming just a day by day thing, and I just never know what to expect. But then again, neither does she.

    And I think that with all said, this is the true test for the relationship.
    So what's it going to be!! It boils down to only two choices!

    1. Give up and walk away, just try to forget everything. All the good times. all the memories and what it was that drew us together. What if the roll was reversed and I was the one being slowly eaten up with this invisible and very debilitating illness.

    2. I have chosen to take care of the one that has given me so many happy memories. And I will be the first to say that this is not at all easy and has required me to make a lot of changes.

    And there is no grey area here it is all or none! Stress plays a very big part in this illness and I do not need to be adding to the stress that this invisible and very real illness puts her through on a daily basis.

    What are the things that I can do to help with her stress. I think that the first thing is to lose the attitude and then focus on complete and total understanding of what my loved one is going through.

    The ATTITUDE; They notice it and we know it. Do any of you think that if we are understanding only part of the time, that this should be enough?

    Ok lets think about this and say that we are very supporting for a few days here and there. You know what I mean, a smile instead of a frown, a “do you need anything while I'm up”, “no problem I'll make supper tonight.” “do you need any thing while I am at the store”.
    When this is happening it is obvious that she is very thankful of the support and help, she is looking a little bit happier (you know, there that smile is that I so rarely see anymore).

    But then for some unexplainable reason we start with the attitude again. I am not going to talk about the ATTITUDE, we already know exactly what it is. What do you think this emotional roller coaster ride is doing to our very sick loved ones? Remember there is no grey area here, it is all or none. And once again, what if the roll were reversed and I was the one being slowly eaten up with this invisible and very debilitating illness.

    This is how I am trying to help my wife or should I say help myself to help my wife. I put myself in her shoes. I listen when she says that she is hurting. When a new symptom starts in, I will find out as much info as I can about it. It is so very obvious that she is going through a lot of health changes. Is this her fault, did she ask for it, does she deserve to have everything taking away from her?

    Like I said earlier I have taken over the entire household from A to Z. The only way that she is going to get better is to get the rest she needs and no stress.

    Lets see should I go ahead and go to the car show today. I know that one of the kids' needs to be picked up while I'll be gone and the wife does not look like she needs to try to drive across town.

    I will never again put such a material thing before a loved one. Did I have to sell our dirt bikes and trailer? Yep, so what, that's just a material thing. The same as hunting trips, fishing trips, the boat, the cars. These things can be replaced however, my wife cannot. I would much rather have the memories of the joy, happiness and love that only a family can give.

    We are now going to separate the men that are willing to make the changes for their loved ones, from the ones that are unwilling to break the routine or have just given up and I will stop at that.


    Ok we already know what changes we need to make: Never act like she is a burden. Never expect her to be able to do the things she was able to do previously until she feels that she is ready. If you get up to get something for yourself, ask her if she would like anything and stop on your way to give her a kiss.

    Always let her know that you love her. I do not believe that you could ever say "I love you" to a woman too many times. I know that we spouses have all been through the crying spells. Never just walk away, ask her if she needs anything. If she says that she doesn't know what she needs then just go over to her and tell her how much you love her, rub her shoulders or knees, what ever it takes to make her feel a little better. And you know what! We can also do this even if our Loved ones are not sick.

    Do I get the feeling of being completely overwhelmed at times? OH you bet, who wouldn't? We are all human. Sometimes we may need to get some extra help to get through it. Mine is God and my love for my wife and kids. I also go to speak with a counselor or our minister, just whatever it takes to be strong for the whole family. Remember Prayer and Love can conquer all.

    There are days that I get up and I just don't feel right and no matter what I do, my wife is going to notice this and she is going to think its all her fault.

    The first thing you need to do is "and trust me on this one" is go to your wife and just be honest. Tell her that you just don't feel right today - you just feel a little down. So if I seem frustrated and distant at times today PLEASE forgive me, its not you love. I know that you didn't ask for this illness and we will get through it.

    She will be a lot more understanding than you may think because she goes through these different feelings on an hourly basis.

    I am so glad that I made all these changes early on in the illness. There have been so many changes since then and every one of them have actually brought our family so much closer than I could have ever hope for. There is more love in this house then there has ever been and I am happy to say that the love is so strong there's no way it can be missed, a smile can say so much. I could go on and on about the little things that we can do to show that we love our spouse. I could even make a list, but I would have to always be adding to it. Every day is a learning experience and with every day our love should grow. I look at it as never let your love and relationship stop growing - keep going. You can't have one without the other they must grow together.

    And ladies I would like to thank you all for the many years that you have spent taking care of us, our family and our homes. And I promise you that every time I hear another man say that all his wife does is take care of the house and kids, I will let them know what I think.

    One more thing - I don't know where I heard this but at some point I was told that moms can always do it all and if they get sick it was no big deal because they could still keep going. They are all SUPERMOMS! Does anyone know how this got started who said it? I hope this is not in the male genes because I can not remember where this memory came from.

    If anyone would like to read all the info that I have on my wife's illness and the info that I have on Fibro and CFS, let me know. But it is very long with lots of links and it will take up 4 e-mails.

    Thank you for your time
  10. PAT

    PAT New Member

    It sounds like we have the same guy! My husband is a great guy and an excellent Dad, but in his eyes, FM doesn't exist. He doesn't want to hear about it, talk about it, read about it, and especially doesn't want to hear me complain!
    He feels that if I didn't think or talk about it, it wouldn't be there, and would probably go away. Everything to him is because of stress or diet. "What did you eat today? Maybe if you ate more vegetables...You must need some vitamins..."
    He cannot stand it that I am on prescription "drugs." He will even tell me to get my med bottles off the counter if company is coming.
    His Mother is one who believes what you talk about will happen. She will not even talk about a disease for fear of getting it. So, see what I am up against?
    It's upsetting to have no support at home. But I can't come here much if he's home, because he sees the board as a place where I "dwell on this stuff, so no wonder I don't feel well"
    Thank God for others out there who provide support for us who don't otherwise have it!
    Patti G
  11. Kimelia

    Kimelia New Member

    I have fibro, cfs neurally mediated hypotention and all the rest of the stuff everyone has.. When the nmh started rearing its head I would just fall on the floor out of the blue because my bloodpressure would drop dramatically like it does. My x wouldnt even move. He acted like it was a normal everyday occurance. He did not ask me what just happened or if I was ok. I became oblivious to symptoms myself because of the family I grew up wiht, him and his family. It was like, ok now I'm falling on the floor, no big deal just rest a minute get up and carry on. Mentioning it to the doc didnt even occur to me for a long time. Him and his family just thought I was lazy and making things up. I now have some supportive people in my life who are like, if something is wrong talk to someone about it! I'm just learning not to push myself and to try to listen to my body..

    I left my husband for other reasons then this, and everyone thought I was nuts for leaving security with my health.. The only thing that makes me ever regret leaving him is that I eventually had to let him take our son because I could not physically take care of myself much less our son.. I live in Georgia and my son lives in boston. I have seen him once in the last two years because of finances. My ex doesnt care that his son is missing out on having a mommy, he doenst try to make it possible for me to see him and certainly dindt help when I went to boston with transportation to see my baby. I drove nearly an hour twice a day to get to him because they live really far out from everything. I feel guilty for not being there for my baby. I call him often.. He is my angel. I didnt intend on going into all this...

  12. ejay

    ejay New Member

    aangx this last week has been one of my hardest in a very long hard struggle where i have finally gotten more and more often to the point of wondering what the point was,not only putting myself thru it but hubby to,then i read your letter and was horrified at how much i was letting me forget what was so wonderful in my life. my hubby never has missed a drs appt now bedridden most of time def no stairs in the last wk alone he moved laundry to main floor next my rm andmoved sewing rm their to for good days then to top it off made me a growing stand so i could plant seeds and not miss my gardens i love, he now tends them and prunes them which i know ,he hates when isay get rid of them he says no way.when things really started going down hill i asked for a divorce we were so active i couldn't imagine doing this to him,he cried so hard and said don't ever insult me again. could it be your hubby is in shock and loves you so much and is to used to protecting you but this time he feels helpless, my point is i was so wrapped up in my anger and pain i didn't stop to think about his and we all handle it diff. or if he truly is the type that doesn't give a poop what do you love to pieces about him,maybe he is part of what is stressing you out only you know don't be afraid to look at it look how well some of these women have done on their own.GOD BLESS WERE ALL HERE FOR BOTHOF YOU
  13. fifty1ford

    fifty1ford New Member

    ang63,

    What about us men who have wives who complain about the money being spent on suppliments and the search for alternative remedies? What about us who have not choice but to contiue working our jobs because it makes up the bulk of the household income, but it takes twenty minutes just to get out of bed each morning?

    I've been married almost 28 years and it is obvious that my our paths or destinies no longer are aligned. It is only a matter of time before our marriage will be history. I feel that our marriage has been over for a long time and while it saddens me, it also excites me to consider the adventure that I will be undertaking. It won't be easy, but nothing in life ever is.

    Peace,
    fifty1ford