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Lupus and my relationship

701 Views 5 Replies 6 Participants Last post by  JoD
I haven't posted in a long time. I have been to ill. But Here I am, I needed to get somethings off my chest badly!!! I have been very sick for 10 years the 7 have been the worst!Lupus has really taken over my whole life. I have tried all the meds and I am still on several but I am still very sick and disabled!! It hurts me so bad to finally say this out loud:worried:My marriage is in a really bad place right now!!!!!!!:worried:

My husband has helped me out alot with all my sickness in the beginning,but he make some cracks here and there along the way. But for the past couple of years it has been unbearable at times!!I try to explain to him how much pain I am in and how sick I am in and he said he doesn't need me to tell him that!! I am just trying to explain so he will understand why I can't do much. Lately nothing. But then he makes smart cracks like,Your home all day why can't you do this or that. When I tell him we need stuff from the store he says why don't you go get it. I know he is worn out!! But I still can't help that I can not lift all the groceries into the car,I can't clean the house.

One minute he acts like he understands and in the next few he is yelling and cussing. He has even made fun of me when I cry!!I try to explain it to him and he said that I just wanted everyone to have a miserable life like mine. When I try to talk to him he rolls his hand at me to rush me up. He said that he doesn't need details he just wants me to hurry and speak fast. I told him it is hard for me to talk fast because I am exhausted and lathargic most of the time and with brain fog it is hard for me to put my words together so I can't talk fast or think of the words fast enough. When I tell him all of these things he just gets mad and hateful towards me jumps up and walks off.ALot of the time He will cuss at me as he is walking away.

He did help me out alot and was very thoughtful but he has changed and believe me I do see his side. He is so tired. He works all the time and then has to take my son to school and help do most things around the house. I do tell him how much I appreciate him. But it doesn't excuse his behavoir because I can not help it. He stays in another room when I watch tv so he doesn't have to be around me. He said he doesn't want to talk to me.He makes me feel like I am nothing.

I know alot of this whole problem is that I haven't been able to be the wife he needs in a intamite way.I can't help that either. I told him that by the time I do start to feel alittle better so that I can have that kind of relationship with him he has hurt me so bad in the way that he has talked to me and treated me I am to hurt to be close to him in that way. I am at witts end,but I have tried and tried to talk to him. He has become hateful. He refuses to listen to me and really treats me like he can't stand me. I can't help having lupus and it had totally taken over my life. I am on disability. I don't know what to do. We have a 11 year old son.

I wish I could get my husband back to the way he use to be. He was loving and caring and now he is a total stranger.!!!!!!!Because he refuses to listen to me I have even tried to write him letters because I don't want to argue. He still won't budge!! Nothing works and he tells me it is my fault that he treats me the way he does. He really doesn't care anymore. He tells me all the time he gets nothing out of this relationship. I told him that I couldn't help being sick and that he could leave if he wanted to (as I was crying my eyes out) PRAY FOR US!!!!!
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It does sound like a very stressful and bad situation for you & for him. None of this is your fault - he chooses his own behavior and how he treats you no matter what you do or how bad your health gets. I am concerned for your son witnessing this kind of behavior and how it affects him now and for the future - for how he will treat women in his life...

Something really has to change here, for your son's sake if for no one else. Can you get your husband to attempt marriage counseling? If not, then it may be up to you to get your son out of this situation. He deserves a happier household than what he's getting right now, as do you.

I'm sorry to hear how bad things have gotten - I wish just saying a prayer would change things for you but it's going to take hard work and action on both parts. Best wishes to you, and I hope you will provide an update to the situation later. (((hugs)))

In a perfect world we perhaps could pay somebody to clean, take children to school, cook, send a husband/partner away for a respite break, take a break away from home just to get away when and if we needed too.

It sounds like you need some back up and some intervention and more importantly some friendship or support to get emotional help and perspective on the situation. Your husband sounds like he needs emotional direction as well.

Sounds to me like a catch 22 situation.

I have a friend with MS whos husband is now leaving her after years of being almost an overly supportive husband.
I could see his resentment of the situation manifesting in how he began to respond or not respond to her. His whole attitude, his depression , having long bouts of time off work etc. They also have an autisitc child who needed full time attention.

The respite care they received every Friday and the holidays he spent alone were never enough.
He felt lonely, constantly tired and overwhelmed.
He also felt
'Like he lived as if he had the illness by feeling trapped

The things is Rene is that there are plenty of partners/husbands who can and do cope.
He owns his own behaviour and how he responds to you and the situation and there is no excuse for bad behaviour but it helps to understand why he is feeling and behaving as he is.
Friends and a social life for him would be of some benefit. All work and no play can make one loose their perspective on life and life becomes dull and lifeless if we dont do things that make us ......US.

There are so many things that one could say that might or might not help.
One thing I do know for certain is that none of this is anybodys fault.

I hope your self respect confidence is not worn away by his attitude.
Should he continue with the silence treatment or shouting at you etc then he is not dealing with his own stuff.
His silence is a from of anger and it can be deafening and defeating.

You do not deserve anything less than compassion and udnerstanding..

I do hope you find some answers.

Big Hug
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Hi Rene

I don't know where you are from but if there is anyway to go see a phychologist (sp?) it may help you out alot to sort-out what is going on with your husband, emotionaly, and to help you better cope with the situation. I do rather know how much of a strain and down-right devastating this can be for a relationship, my husband trys to understand to a point and then at times just blows me away with a remark or two of "why this or i should do that" and (as we ALL know) only we know how this FEELS, living with it 24-7 and others do only see what they can or empathise. It's **** being the way we are, we can't help it for pete's sake.! I pray that you can go to a free mental health clinic or ask at other Dr.s offices to see if they can tell you where you can find help cause this is just a nightmare for you I'm sure.:sad:
Try not to stay there and cry if there is any way that others, outside the immediate family, can help you or a good friend or free transit for the disabled.
God bless you, I'll be pulling for you!!!!!!!

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Hugs to Rene...

It must a very tough time for you... someone who you thought you could rely on (forever...), suddenly changed...

I am not much of a relationship advisor, but I will pray that things will work out to its best, for you, your hubby and son ...

Could your husband be in some kind of stress from work? There are always reasons for sudden behaviour change .... ask yourself ... "WHAT", "WHY" and sometimes "WHO"...

{{{{Hugs to Rene, again}}}}
this only applies if you live in the US and have worked long enough toqualify for SSDI.

If so, apply for it since the lupus is so disabling. You could use the money to pay for housekeeping, some one to do shopping etc. Give hubby and you both a physical and emotional break.
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