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Thread: spouses

  1. #1
    Join Date
    Dec 2006
    southeastern ohio
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    Default spouses

    About the time I began getting diagnosed, MCTD then, i began dating my now husband. We have been married now for a year and a half and the dr's appointments increase along with meds, changes, and my need to learn and educate myself.

    my husband has never been interested in reading / educating himself on things he doesn't enjoy, and so when i approach him about anything going on with this part of my life, he is very standoffish, he thinks i'm obsessive, hypochondriac, etc., etc.,

    he says he's interested but what is he supposed to do. he says i told him that already or he knows but he can't fix me so what is he supposed to do. when i say i dont' know, or there is nothing you can do , he just gets reaffirmed of his absence in this disease.

    I don't want him to think i'm obsessive when i think i'm being smart. i figure no one knows my body better than me, so i'd better know the research to go along w/ it. but he just seems aggravated.

    what can i do to get him interested in learning with me. sometimes i think he's just scared to know what might really go on with me, or in the future. but i want him to be more sympathetic instead of apathetic.

    what routes can i go without being too pushy?

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    I think that you've hit the nail on the head when you said that he is afraid. This diagnosis has happened to you personally and physically, but it has also happened to him and that scares him. Why? Because he has NO CONTROL over it, he cannot do anything to fix it and he cannot make it go away. Losing and/or not having that type of control is a major issue for men. That is why he is constantly asking you "what can I do about it?" It causes him pain that he cannot take away your pain. Now, unfortunately, most men deal with this emotional crisis by becoming angry or standoffish. As women, this attitude hurts us because we feel that they do not care - it is exactly the opposite. It has been found that they care very deeply, they just do not know how to handle their feelings of helplessness and this angers and frustrates them.
    I have discovered that my husband does not read the material that I give him. But, every once in a while, he will let it slip that he has been on the internet and has read about my conditions, my symptoms and my medications. He will, sometimes, throw out suggestions for me that he has found on the internet. I ALWAYS follow his suggestions because I realize that it took a lot for him to do what he did :lol:
    Continue to keep him advised of what your doctors are doing, what your test results are, what your doctors say you should or should not do. Continue to educate yourself and let him know what you can or cannot do (and why). Always let him know that if he has any questions, you will answer them for him or direct him to where he can find the answers. You cannot force him to read the information and he may never show interest in the way that you think that he should. But, I can almost guarantee that he IS interested, he does want to know and he does want to help! His path is just different from yours and it will take understanding, on both of your parts, for you and he to navigate through this! Continue to communicate with him and be responsive to him. Tell him that there is nothing that either one of you can do but to pay attention to your symptoms, make the appropriate changes, listen to your doctors and take your medications. You are not asking him to do anything, you are just making certain that he understands what is going on. What he can do is to just give you some comfort when you need it. You know that he cannot fix it, you do not want him to fix one can fix it. However, he can give you support, encouragement, comfort and understanding. That is 100 times better than fixing it!!
    Here is a short article I found that deals with significant others:
    "The spouse or significant other of lupus patients can also have a difficult time with understanding lupus and its effects on the person they care about. Day-to-day support is essential to the lupus patient, due to the unpredictable nature of the disease. It can incapacitate the sufferer literally overnight, with little or no warning. The spouse or significant other also has to deal with feelings of guilt sometimes: "Is she having a flare because we went out too late last week?" "Is she sick because I don't do enough of the housework?" "Is the lupus affecting the way I see her?" These can be tough issues to deal with!
    The major thing to remember when dealing with relationships with significant others is communication. It's fine to feel any emotion--It's how we deal with those emotions, and how they are perceived by our loved ones that makes a difference. For example, if a lupus patient is weaning off a round of steroids, it can make her tired, irritable, and subject to bouts of pain. These things can (understandably!) cause her to withdraw into herself, without much time or energy to devote to her significant other. Without communication, he may feel that she is ignoring him, or that his efforts to make her feel better are unappreciated which can, in turn, make him withdraw from her. This ugly cycle can only be broken with much love, patience, and most of all communication!"

    I wish you the best!
    Peace and Blessings

  3. #3
    Join Date
    Sep 2006
    Thanked 1 Time in 1 Post


    I agree completely with Saysusie's comments. Men really want to have a handle on things, and your lupus is something that he can never 'have a handle on'...not really. All he can be is a support to you, and sometimes that's a difficult role for men. My husband is learning, but I know it'll be an on-going journey for both of us.

    In one of the many books that I've read since I was diagnosed I read something that has helped me. I can't find it to give you the exact quote, but the idea is this: Don't let the disease define your relationship. It's important for your relationship to be about more than how you deal with lupus. It's easy for me to make my illness the focus of every conversation. Instead, I'm trying to create kind of a 'lupus-free' zone in our lives, making sure that we focus on other things too. Yeah, that's pretty hard to do when I'm really sick, and that's OK. But there are good days when I can really make it a point to focus on the other things in our lives. I think it's good for both of us.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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