How does your spouse handle it?

[Samsmom]

:( Hi Everyone!

I am just wondering if any of you have had trouble in your marriage as a result of your medical troubles? My husband is fed up with my health issues and is having difficulty being sympathetic. I will admit that since we have been married I have had one health problem after another. First, I had Graves' Disease and my thyroid removed, then two difficult pregnancies and months of bedrest, now this... two years of what is turning into a lupus diagnosis. (My rheumy says I have all of the symptoms, but my blood work only slightly abnormal... so no official diagnosis yet.) Last week my rheumy told me I have pericarditis (inflammation of the lining of my heart) but I still don't have a diagnosis! I feel like a fake. I don't want lupus, yet I feel like I would have a more legitimate complaint if I did! I digress.

I have been feeling more sick lately and my husband is losing patience. We have a 4 year old and a 2 year old. My husband works alot and I stay home with our kids. I have handled most of the house related chores, but have needed more help lately. My hubby is bitter about it. It ends up making me feel guilty, but I can't do much about my health, right? Ironically, my husband was dx with cancer this summer and I did more than you can imagine to help him through it! I thought his experience would make him more sympathetic, not less! He admits he is less and also thinks it is weird given what he has been through.

I am just tired of feeling like a burden and would like to have help without always asking! Did any of you go through this with your spouse? How did you get through it? Any tips or thoughts would be appreciated! Thanks for letting me rant!

Lee

[peonyprincess]

Lee

Please feel free to rant and rave all you want. I think those of us with spouses have at one time or another felt like we have been left out in the cold. Regardless of how caring and giving our families may or may not be, there has been at least once I would venture to bet, that our spouses have felt more than fed up with us and our problems.

My hubby and I started dating in 2004 and things were going fine. All of a sudden, I became deathly ill and was in the hospital from Dec 2004 to Feb 2005. After being out of the hospital for about 2 weeks, we were married, which had been planned. Things went fine for the most part. No big illnesses, just basic aches and pains every now and then. In Sept 2005, I went in for a basic surgery and didn't fair very well and spent the next few months in and out of the ICU. I finally got to come home in Dec 2005. Again, basic trips to the ER and the doctor for a variety of aches, pains, shingles, etc, etc, etc. I realized in Jan 2006, that I would not be able to return to my job as an RN and filed for disability. To date, I have been turned down twice and am now awaiting a hearing date.

Since my Lupus has come out of remission, our daily lives have changed and of course it isn't for the better. I can no longer keep up a fast paced life of working and cleaning house. I can no longer chase after the kids, the dog, etc like I used to do. My energy level has plumeted and that includes the sex life as well. My attention span is short some days and longer other days. I can be the most irritable person to be around one minute and the sweetest person you could ever find the next. I am sure it is hard on my hubby and my kids to comprehend everything that I am going thru as I do not always understand. My family I believe tries to be understanding, but there are moments that they are just cold and nasty. I know people are tired of asking me how I feel and are equally tired of hearing the truth. If I lie and say fine, then they demand a great deal from me either emotionally or physically. To say that no one really gets it, is an understatement.

I along with others wish things could be different. I would love to turn back the clock and try this again, you know to see if life would give me a different outcome. I could go on and on, but it is a very familiar story to us all. So yes, I totally understand how you feel and please know that you are not alone.

Nancy

[lupie98]

Hi! Nancy said it so well and put my feelings into words. I have been told men just want to take care of things and fix them. If they can't, they get fustrated and angry inside. I believe women are caregivers and that is what we do so it is easier to take care of others needs than our own. I try to put myself in my husbands shoes though. He went from having a really fun outgoing wife to a really sick bedridden wife in a matter of days. At first he always wanted me to get up and try to feel better but he soon learned it just did not work that way. I was also holding a lot of my feelings in because coping with the physical part was just too overwhelming to think about other stuff. I had so much to deal with that I could not deal with the real world while he was having to do everything. It is so hard for us to understand what is going on so it is nearly impossible for others to know. I think it takes a lot of time. I know you don't want to be sick with lupus, but if you had a dx it would be on your side as far as being justified. That is normal for anyone.
I wish you well!!

[acard]

Lee,
You are not alone as you can see and other gals hit the nail on the head.
I had been married 4 yrs. when I was finally diagnosed w/ an auto immune disorder-not Lupus yet (it was borderline positive) and I was a type A personality and go go go gal. My hubby married a bubbly, thin, enegetic, fun and person who just loved life and fully enjoyed it.

Then I became a different person due to the multiple chronic illnesses. We went through several very difficult years and I know if it wasn't for our daughter and our faith we would not have made it.

The hardest part was he was scared, but unable to communicate it.
He felt overwhelmed by now having to pick up my slack. He is very easy going and has the attitude"it will get when it gets done" to say we are opposites is an understatement.:rotfl: :rotfl:

The great news is we are still married and happily I must add:)
My hubby has had to adjust and we have had 11 yrs. to do so.
He is by far the BEST hubby and father and had we given up and in to these stupid chronic diseases we would not have found this "True Love" I know too mushy and gushy:rolleyes:

Counseling for both of you would be good if it is possible. You both have been through a lot and that is understatement.

You have had to adjust to marriage and then children and for a "healthy" couple this is difficult, now throw in 2 people who are each dealing with major health issues-any couple would struggle.

Hang in there and remember you are only one person.
Feel better soon.
Happy Holidays,
Becca:xmas3:

[Pollyanna]

Lee,

Nancy, Becca and Lupie said all the things I wanted to say, so let me just add my "you are not alone" sentiment.

My son and husband have adapted much quicker than my parents. I think what helped us is that we had 10 plus years of a healthy me in our marriage before things went downhill. My husband says that a defining moment for him was watching me in the ICU after brain surgery and literally dying in front of him. (I had picked up an infection during surgery.) He felt so totally helpless. He thought then of life without me and decided that it wasn't what he wanted to contemplate.

So when I recovered two weeks later, to the point that we knew I would live, he says he didn't care what it took. Sweet man. Even now, as much help as he is around the house, he has his moments when he could curse lupus!

I know our faith pulled us through. That and a determination that our marriage was not negotiable. So we've made the best of things. I don't want to sound preachy or anything...and he does not wear a halo! :lol: We just do the best we can.

One thing I've learned is to budget our money and in our budget is domestic help. I cannot do it alone and it's too much on my husband to add housework on top of laundry, bill-paying, cooking, etc. So I pay to have someone clean every other week. It is worth every penny!

We can call ahead or shop online at our local grocery and they will have all the items pulled so you can just pull up, pay and bring them home. This is great for flare days.

Oops, I'm digressing. My parents are still in a sort of denial. But that's another post another time! :p

I agree that couples counseling may be a good idea and be sure to always communicate your feelings. Even if you end up sounding like a broken record...as least he will know where you stand. He can't read your mind. I wish the best for you both.

Love, Pollyanna :there:

[Christine UK]

Oh my friend(((((((((((((hugs)))))))))))))))))
It is very hard....I am lucky because my hubby is amazing...However....he does get fed up,as i get fed up when he has a sniffle and thinks he has flu !!!
I mean lets put ourselves in their place...seeing the person you love so much hurting,if its not one symptom its another....
I think another thing is...how many people ask how HE is ??? i tend to every so often remind people he excists !! for example someone will say how are you etc..i then slip in oh hubbys good to what would i do without him...you will be amazed how many people now say oh bless hes a brick lol...
another thing is on your "good "better days etc...just remind him how special he is...do a job etc that you wouldnt normally be able able to do because you feel horrid...
daft it may sound but it helps...big hugs hang on in there he loves you and dont forget to tell him how much you love him back...and just how lucky you both are...hey your a strong lupie remember !!!! hugs x x

[AmandaB]

Hiya,

My boyfriend and I have been together for 14 years. The last 5 1/2 have been spent dealing with problems as a result of Lupus and have been very frustrating for both of us.

Before my diagnosis we were just on the verge of thinking of starting a family which is now out of the window until I am bettter. Although he doesn't blame me directly, he gets very angry and often asks 'why us?' - because he feels as though he has the illness too as he has to help me. He does however forget that I have been there for him when he has had to deal with IBS & psoriasis! He's quite a stressed person so doesn't cope too well so I have to cope for both of us.

I know he means well but it can be pretty hurtful when he says he wishes I was how I used to be: thinner, more outgoing, happier, etc. I remind him that I too wish things were different but have to remind him that for all the bad things we go through, there is always someone worse off than us.

Ok, we don't have kids (yet) but we do have each other and for now that's enough.

Amanda

[lilirishrose]

im sorry your having such a rough time. People have no sense of compassion. My partner is completely supportive and is constantly trying to learn all she can about lupus to understand and be knowledgable.wants to be completely involved in my treatment. There is hope, not everyone is like your husband. hang in there

[rwb200]

I will respond to this but as a spouse not as a person with Lupus.

It can be very dificult to handle the problems and stress of a loved one with a medical problem.
Each of us handles this diferent and react diferently.
The fact that they have not yet put a name to it can in a way make it worse.
You have nothing to set your mind to and can't adjust to it because you have no name for it.

Woman are frequently by nature more loving and nurturing then many men are and this can result in what seems a unfair lopsided relationship.
Men are also frequently the big baby of the family, they want cared for and have a hard time adjusting to caring for someone in that way.

Men are also more imotional. This does not mean they are more likely to cry. Many can't do this at all because they have been taught they can't.
It means they react stronger to a situation and rather than letting emotions out in a manner such as crying they strike out instead. Hopefully not in a physical manner but in a anger type of manner.

This man has had months of being nurtured and cared for like never before while he was having problems. Believe me the baby in him LOVED it. Now he is not getting it the same and he is needed to return this. He does not want to return it he wants to continue to receive it.
He likes being the one who is cared for.
He probably does not even know he feels this way. He is confused and is having a hard time trying to figure it out as well.
The fact that he admits that how he feels is odd is a good thing it shows that he knows how he is reactng is wrong.

[Samsmom]

Merry Christmas Everyone.

To add insult to injury my husband admitted to cheating on me three days before xmas. How will I survive this? I am not eating, sleeping, etc. If this disease doesn't kill me, my life will. I know I need to take care of myself and my kids but I am finding it hard to find the strength.

[f3r613]

So sorry you haveing a bad time at the moment, i first got my taste of it before i was even diagnosed, my girlfriend at the time came home from work (she was a student nurse) while i was in the worst state i had ever been in the pain in my joints was unbarabable and i could barely move, but she went straight to bed and left me on the sofa in pain refusing to help me even climb the stairs, the next morning she packed a bag and left with the words "I have to look after sick people all day, i don't want to do it when i get home as well" i only ever saw her once again so we could cancel our joint bank acount. Since then i have had alot of similar problems when trying to start new relationships some stay for a while and leave because they can't cope, some freak out as soon as they find out i have a serious illness (One girl went so far as going from one minuite being all over me to the next finding a bouncer and telling him i was harasing her to try to get me thrown out the club we had gone too together).

But who really knows, some could have actually left because im ill, or they could have just found it a convinient excuse to leave because they got bored with me.

My point is it can't really be put down to the way men are or the way women are but the way people are, there are selfish unfeeling people everywhere male and female, but there are good people too, i guess we just need to find them.

Keep your chin up though, and i hope everything works out for the best.

[Rene]

I have been married for almost 17years,been with my husband 18years. Lupus has been Very difficult for our marriage! I know that he loves me and I love him. But we have been arguing alot! yes I just admitted it. The frustration level runs high! My husband is a great provider for me and my son!! He works hard to make sure all of the bills are paid. But he is not a good listener! He admits it too. He does believe me and sees my pain:mad: But there are days I feel like he just doesn't care!! I know he does,but he just totally ignores me. He said that there is nothing that he can do about it. He is a fix the problem kind of person so if he can't fix it he tries to ignore it or it will drive him nuts. I know that he doesn't mean to hurt me,but it does hurt me. I can be in severe pain in my legs and back and crying and he just watches TV. Even laughs at some of the shows. I don't understand that. But I just think that he has seen me sick so long that it just becomes second nature. In other words he's just use to it. I know he doesn't mean to hurt me,but I guess this is his way to deal with it. Sometimes I end up very angry about it but then I tried to put myself in his situtation. Whenever you are around a sick person daily you have to find some way to survive and if you let it get to you then you would not be able to cope with your own responsibilities such as work,money and supporting your family. SO I just try and think about it that way. He is only human and Lupus has to be frustrating. Like I have said before as we all know.Chronic disease effect the whole family,not just the sick person. WE all understand your situation. GOD BLESS!!!:)

[macfamily53]

Wow samsmom

I am so sorry that he would do that to you but i think some people period are raised that way that when the tough get going they run cannot handle it at all. I think he loves you still but just could not handle it. But does not know how to handle something he does not understand. I hope you got some family to help and support you through this tuff time. I hate to say it but someone else said it is probably just an excuse to get of the situation without feeling guilty about it if that makes sense to you.i have been very blest so far with a wonderful hubby of 25 years and has had to work 2 full time jobs at age 52 years old. I keep thinking he is going to get tired of it and up and leave me but i think that is just my insecurities i need to wrok through becuase he says no way would he ever do that and does not mind at all helping support his family if it means it helps my health. We always had a good marriage but we got and even stronger one now. I tell him every day he goes out the door to both jobs how much i love him and appreciate what he does for me always. I know he says to me i do care about you but just wish i knew what to do for you. I just tell him listen to me is all you can do and hold me when i need it to. We have 2 kids that when i found out were almost 18 and 16. It has been hard for them to try to understand adn watch mom in such pain some days but i have always tryed to let them know that tomorrow will be better i hope and if not i am not going anywhere for a long time. becuase i will fight this with every tooth and nail:rotfl: Not literally though of course.We both have our faith that helps is defaintely get through this but it is never easy when he is so exhusted all the time from working so much either.I guess i just want you to know that there is a guy out there that is not pertfect but will except your health and you if he loves you enough he will.Guys are not perfect but neither our women unfortunatley.Try to hang in there and know thatwe are here for you as your second family defaintely even if all we can do is listen to you i hope we help you somewhat there. Take care and plese no this is not your fault at all he was going to do that with or without the lupus because mpst people are just that way no matter how much you love them.Keep venting please it will help.

Tammy
(((((((((((((((((((((((hugs))))))))))

[Mariposa]

I'm sorry about your situation Samsmom :worried:.

But you're not alone, we're with you and you have the unconditional love of your children too. :wink2:
You'll be in thoughts and prayers... Hugs, Mariposa8)

[charlett]

It is really sad that your husband behaved that way. But you did nothing to cause him to behave that way. Sometimes serious illness and tragedy bring out the worst in people. Would you rather him be with you and resentful? What he did wa lousey. You deserve better and so do your children. Love, life, health and emotions are all so fragile. And some people can't grasp that. They run form any pain or inconvience. They hide from challanges. But after you get through the heartbreak you will be able to feel stronger. I hope you can get past this and be happy. I am sure your beautiful children love you very much. Their love will help you. Children are a true blessing. They show us want love really is. I am truley sorry for you situation. Charlett

[aliciakeke]

I can definitley understand you not wanting to be a burden and have help without asking. I am not married but my mother is who I am commenting on. She halps me tremendously, I have a three year old and she basically takes care of him the majority of the time. There are times when I feel I am a burden on her and wish I could do things myself. Sometimes she is sympathetic but then there are others where she is anything but. I know she thinks i am not in that much pain and i feel bad cause she does so much, things that I should be doing. But your husband is a different story. He does not deserve to be with you if he did the things he did. I believe that God gives the toughest trials to the most special people so I believe all of us who have this awful disease are special souls and deserve the best. So if your husband or partner or anyone is not treating you or taking care of you like you should be they dont need you. Does that make any sense at all? I sure hope so. I am hoping you get through this tough time and i hope my words helped a little. I hope they make sense. I am praying for you and your children.

Love,
Alicia