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View Full Version : Husbands? Do they get it?



pinkjmf
06-21-2006, 10:44 AM
I was wondering if any one was feeling the same way.I am getting over a flare and he knows that and this morning he asks me to take his mom to an appt. she had schedule for today.{On his behalf he did have something else planned.} My mother in law has to have oxygen that I have to carry and a wheel chair that has to be lifted into the trunk of the car and when we get to where we are going I have to push her around and watch my 13 month old and my 7year old ADHA son.I can usually do all of this but I just have no energy and just chasing my kids at home wears me out right now.I looked at my husband like he was crazy.I told him NO,not today.Is he just oblivious to me or is he in denial that his wife is sick? If someone else is out there that feels the same way please respond.

stjames13
06-21-2006, 01:19 PM
8)
HI Jessica,
First let me tell you that I AM A HUSBAND,BUT I AM ALSO THE ONE WITH LUPUS, among a slew of auto-immune problems and recoveringfrom a broken back and neck.

I'll give you some insight from a MAN"S point of view.

You see alot of US men have a hard time talking about our feelings. We've never been to good at that.
But TRUST ME when I tell you that your husband is totally broken up indside over the diagnosis you have gotten, and the FACT that he can not fix it.
He personally can not deal with the fact that HIS WOMAN the love of his life has been afflicted with this incidious disease.

What makes it worse is the lack of knowledge and answers as to WHY<HOW and HOW DO WE TREAT IT??? that is NOT available to us due to the fact that LUPUS has so little known about it....they still do not even have a test that proves INCONCLUSIVELY wether or not we even have it.
There are FALSE POSOTIVES and FALSE NEGATIVES.

AS a MAN I can HONESTLY tell you that if I was told that my wife had a potentially deadly disease it would BLOW me away to the point that I would need a therapist.

For your husband right now feels like he is unable to do what he swore in front of GOD to do and that is to take care of you , to love and PROTECT YOU.....and that's the part he can not deal with.
HE can NOT PROTECT you from this.

He can't KICK IT"S BUTT, He can;t take you to Canada or somewhere where they do have the treatment for LUPUS, he can;t do a THING !!!!

So in his mind he feels beaten, useless and like he's a bad husband.

In watching you go through this his mind which is a PERFECT MACHINE to help us get through anything put in front of us, has put him in DENIAL and made him believe that if YOU to go into denial you to will no longer have LUPUS.
So as long as he treats you as if you are healthy in his mind YOU ARE !!!!

But inside he too is hurting, when he shaves and has to look into that mirror he knows the real truth, and he also knows that MAYBE one day you may no longer be his LIFE MATE and he'll be alone.

It may sound selfish but it's not.
It is the only way he can deal with it because inside he too is dieing, dieing of humility that he can;t fix you, dieing of embarrassment that he can;t make you smile, or get rid of the rashes, or just hold you in his arms and PROMISE YOU EVERYTING WILL BE ALL RIGHT.

EVERY MAN wants to be his wife's HERO and he feels he can no longer be yours.
Only a doctor can be that right now.....and because of that he feels like a lesser man.

Maybe instead of getting mad at him, try talking to him and tell him that you know that he's done all he can, and that it is not his fault that he can not find a doctor that can cure you...and then tell him that he will
always be your HERO no matter what.

If you do this I guarantee you that you will see a 1000% turn around.

After the two of you have this talk I promise you things will be different because then the job of being your life saving hero will not be upon his shoulders as it is now.
You see as long as his mind keeps him in denial then he'll not have to deal with the reality of what you and I have.

My wife had somewhat of the same problem when I too was first diagnosed....and this info was given to her by MY therapist and it worked like a charm.
I have since then told this little tid bit to many women who have the same problem with there husbands....and to tell ya something about us MEN...we are so scared of having to live without our WOMAN we refuse to believe that they can ever even be sick and if they are WE WILL find the right doctor to fix them.

You need to have a talk with your husband without any arguements just a nice and calm converstion.....by the end you two will be ONE once again and you will no longer be mad at himself and he will be OK with the fact that HE CAN NOT FIX THIS and be able to be your HUSBAND no matter what the conditions may be !!!! It's hard on us all !!!!

I hope this helps

St James 8)

ButterflyRN
06-21-2006, 04:58 PM
That was wonderful stjames!! I know my husband feels alot like what you said not being able to fix it. When we got married I had been in remission for almost 6 years and with my recent flare he didn't think I'd get sick this soon. He thought it would be years down the road because I had been feeling so well. And that's why the lupus is so unpredictable!

Good luck Jessica! Our husbands just need a little support (emotional) from us too!!

pinkjmf
06-21-2006, 07:04 PM
I thank you that was very kind and needed.I guess he always seems so put together that I just assumed if he felt that way he would have told me.I really am grateful for your wisdom and appreciate it alot.I am going to use your advice.

stjames13
06-22-2006, 07:04 AM
8)
Remember that US MEN are not as COMPLEX as we would like to come off as we are!!!! :wink:

Trust me when I tell you HE is as HEART BROKEN over this as you are, and in a way even more. WHY??
Because he can not fix it, and I would imagine that he can fix everything around the house and at work.....but this has made him feel inferior.

I'll be the first to admit that YOU WOMEN are much SMARTER than
US MEN, so you have to figure a way to let him know it's OK that he can't fix it but it's NOT OK to continue to beat himself up and also he MUST STOP acting like there is nothing wrong with you.
HE MUST face FACTS...maybe getting him involved in your treatment and I am POSOTIVE there MUST be a book out there for the significant others for those afflicted with LUPUS....that book may be very helpful for him.
Or possibley a SUPPORT GROUP FOR THE FAMILIES OF THOSE WITH LUPUS....check at the Local Hospital.

And if you see a THERAPIST ( which I would reccomend) tell him/her that you NEED to bring your husband in....maybe with you or maybe by himself so he can get it out but not show how upset he is in front of you...only YOU know that answer.

I hope this all helps you.....dealing with this disease is hard enough, so do all you can to make it easier on BOTH of you.
You are hurting physically and emotionally but HE is CRUSHED as a MAN and needs to know that he should not be.

ONLY then can HE can begin to be SUPPORTIVE for you !!!!!
See how SIMPLE WE MEN really are !!!???? :D

GOD BLESS YOU

St James :wink:

TracyDawn
06-22-2006, 01:12 PM
I had to reply to this cause the advice St James gave was soooooooo dead on with what we went through at my house. dh was getting distant, surly and so not helpful it was unreal. I finally said either counselling or divorce, and he knew I was not kidding. I had had enough, dealing with this disease was bad enough but not having any support was almost worse. I had left dh stuff to read on lupus, gave him websites to look at, to educate and learn and he refused to look at them.
We saw a therapist. I told the therapist how I felt and dh did the same. When he brought us in the room together, he told me that I needed more patience but he flat out told dh that 1. he needed to be more supportive 2. I was sick and he could NOT fix me no matter how much he wanted to 3. he had to face the fact that the lupus was not going to magically just disappear no matter how much we willed it to and 4. denial was no longer an option because I needed his support and understanding, his encouragement on my bad days and to help me celebrate the good ones. He really opened our communication lines and we have never been better than we are now. What I saw as rejection and unsupportive was his way of protecting himself from my disease and just not knowing how to help me. I was guilty of trying to do it all myself until I just collapsed in pain. Now when I say you can't touch me today he doesn't get offended and feel unloved, he knows it's because it hurts me today and hopefully tomorrow will be better. Communication is the biggest key to saving your marriage in something like this because denial on EITHER part will ruin it all. You have to be willing to let him help you any way he can, whether it's rubbing your feet, tucking you in bed, sitting quietly or letting you have alone time. He has to face facts that you do have limitations but you can work around them and have a much better and loving marriage for it. As St. James said, the biggest problem with spouses is they can't fix us and it kills them not to be able to. Once they realize that it's ok, you know they can't but you love them anyway things will get better. It did for us. But communication really is the key.
dh's biggest gripe with me is I keep things inside so that I won't feel like a burden to him. THAT makes him madder than anything because if I don't tell him how bad (or good) I feel he can't begin to know how to support me.
I think one thing those with a chronic illness do forget is that it doesn't just affect them, it affects those that love us too and sometimes we have to help them as much as they want to help us. ;) Good luck!

stjames13
06-22-2006, 02:06 PM
8)
THANKS TRACY DAWN,

I sincerly appreciate your kind words and the fact that you went through exactly what I was trying to help her out with
Seems like that it happens to EVERY couple!!!!!!

HOPE YOU ARE DOING WELL

St James

Saysusie
06-23-2006, 09:10 AM
St. James and Tracy;
Your posts were truly and education for me. Although my husband is very supportive and does try to educate himself about my Lupus and (as St.James so eloquently put it) a slew of other auto-immune problems, he does sometimes fall into that "denial" stage and act almost as if he's forgotten that I am sick.
Both of your posts are good reminders that we need to think about how our illness affects those who love us and we cannot expect them to react to us in a supportive way until we have some good communication. Everyone wants to know and feel as if they are appreciated: us just as much as our loved ones.
I especially am going to take to heart the fact that our husbands want to be our heroes and want to protect us and make things better. Therefore, they feel impotent with reference to this illness because no one but our doctors and ourselves can make things better! That was truly and eye opener for me. So, I will talk to my husband tonight to let him know that he is truly my hero, for so many reasons - reasons that he probably has no idea that I feel in my heart. But, St. James has made me aware that I need to let him know!
Thank you both for the eye opening education!!
Peace and Blessings
Saysusie

stjames13
06-24-2006, 07:49 AM
8)
ANYTHING FOR YOU SUZ !!!!!

St James :)

Missy
07-02-2006, 04:25 PM
I think counseling can be a godsend. I don't know how couples with poor communication can get through something like a chronic illness. And everyone has their own issues, and the stress and grief that your partner has an uncurable chronic illness for the rest of their life brings out those past issues in life, too.

Counseling was helpful to us, and I still have to remember to allow my husband to grieve. Our life plans have been altered due to lupus, but keeping open communication about our feelings allows us to get through it and enjoy what we still have - each other.

sara
07-03-2006, 01:31 AM
well, i must admit that after reading james's viewpoint i pondered a lot and am trying to look at our relationship with a different angle. Most of the time my husband doesnt react or voices concern when i tell him about the pains and aches that i go thru or he will respond with a little smile saying "oh ! again" as if i am talking abt a simple headache...We Had planned to move to Toronto this year but since he cannot do so due to some probs, he is insisting that i go alone with our two small kids while he can join in a year or two. I dont know a soul in that country and my hesitation to make a move is termed as lack of confidence and complete dependence on him which is irritating me no end...after i read james's views, i mellowed down a little but cant the husbands be just a tiny bit more demonstrative just to assure us that they care :( ?

cnlb2005
07-03-2006, 09:34 AM
8)
HI Jessica,
First let me tell you that I AM A HUSBAND,BUT I AM ALSO THE ONE WITH LUPUS, among a slew of auto-immune problems and recoveringfrom a broken back and neck.

I'll give you some insight from a MAN"S point of view.

You see alot of US men have a hard time talking about our feelings. We've never been to good at that.
But TRUST ME when I tell you that your husband is totally broken up indside over the diagnosis you have gotten, and the FACT that he can not fix it.
He personally can not deal with the fact that HIS WOMAN the love of his life has been afflicted with this incidious disease.

What makes it worse is the lack of knowledge and answers as to WHY<HOW and HOW DO WE TREAT IT??? that is NOT available to us due to the fact that LUPUS has so little known about it....they still do not even have a test that proves INCONCLUSIVELY wether or not we even have it.
There are FALSE POSOTIVES and FALSE NEGATIVES.

AS a MAN I can HONESTLY tell you that if I was told that my wife had a potentially deadly disease it would BLOW me away to the point that I would need a therapist.

For your husband right now feels like he is unable to do what he swore in front of GOD to do and that is to take care of you , to love and PROTECT YOU.....and that's the part he can not deal with.
HE can NOT PROTECT you from this.

He can't KICK IT"S BUTT, He can;t take you to Canada or somewhere where they do have the treatment for LUPUS, he can;t do a THING !!!!

So in his mind he feels beaten, useless and like he's a bad husband.

In watching you go through this his mind which is a PERFECT MACHINE to help us get through anything put in front of us, has put him in DENIAL and made him believe that if YOU to go into denial you to will no longer have LUPUS.
So as long as he treats you as if you are healthy in his mind YOU ARE !!!!

But inside he too is hurting, when he shaves and has to look into that mirror he knows the real truth, and he also knows that MAYBE one day you may no longer be his LIFE MATE and he'll be alone.

It may sound selfish but it's not.
It is the only way he can deal with it because inside he too is dieing, dieing of humility that he can;t fix you, dieing of embarrassment that he can;t make you smile, or get rid of the rashes, or just hold you in his arms and PROMISE YOU EVERYTING WILL BE ALL RIGHT.

EVERY MAN wants to be his wife's HERO and he feels he can no longer be yours.
Only a doctor can be that right now.....and because of that he feels like a lesser man.

Maybe instead of getting mad at him, try talking to him and tell him that you know that he's done all he can, and that it is not his fault that he can not find a doctor that can cure you...and then tell him that he will
always be your HERO no matter what.

If you do this I guarantee you that you will see a 1000% turn around.

After the two of you have this talk I promise you things will be different because then the job of being your life saving hero will not be upon his shoulders as it is now.
You see as long as his mind keeps him in denial then he'll not have to deal with the reality of what you and I have.

My wife had somewhat of the same problem when I too was first diagnosed....and this info was given to her by MY therapist and it worked like a charm.
I have since then told this little tid bit to many women who have the same problem with there husbands....and to tell ya something about us MEN...we are so scared of having to live without our WOMAN we refuse to believe that they can ever even be sick and if they are WE WILL find the right doctor to fix them.

You need to have a talk with your husband without any arguements just a nice and calm converstion.....by the end you two will be ONE once again and you will no longer be mad at himself and he will be OK with the fact that HE CAN NOT FIX THIS and be able to be your HUSBAND no matter what the conditions may be !!!! It's hard on us all !!!!

I hope this helps

St James 8)

i can totally agree. my lupus has affected my marriage so that we have been separated almost 2yrs. he told me that he burned out. i understand but instead of turning to other women he should have turned to me and we turned to God. now my family has been destroyed. we are headed for divorce. he's with someone else. my children are devasted and i feel like i'm to blame.

Saysusie
07-03-2006, 03:33 PM
Please do not blame yourself. I am sure that, if given the choice, you would have chosen NOT to have this disease. Therefore, since it was not a choice that you made, you cannot be blamed for what this disease has done to you both physically and emotionally. I can only respond to what you have told us about your husband. Based only on that, let me say that it takes a very strong, unselfish, unintimidated, selfless, compassionate, caring and compromising man to deal with having a wife with this disease. Unfortunately, those types of men are few and far between. I would like to know just what was he burned out on?
Was he in pain? Was he suffering from chronic fatigue? Was he riding the roller coaster of relapse/remission? Was he dealing with lupus lesions and lupus ulcers? Hair loss due to lupus? Side effects from the many medications?
NO, he was not. His role was to understand, educate himself, provide support, be loving and understanding of his wife who was suffering from many (if not all) of the symptoms I mentioned and probably even some that I did not mention.
So, do not blame yourself for this disease or for any one else's inability to handle it. His failure to do so speaks more towards his inadequacies than to yours!
You must not stop taking care of yourself and your health. Do not allow this added stress to exacerbate your illness!
Take Very Good Care Of Yourself
I Wish You The Very Best
Saysusie