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 it..no 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