How did they handle your diagnosis.
My husband won’t talk to me about how he’s feeling or what he’s feeling. He’s never been the emotional or even very talkative man. But not knowing what he’s feeling or thinking is killing me

My husband is similar in nature to yours. He isn't the sort to get emotional usually, and when he does, he tends to shut down. He had some difficulty dealing with things before and after my diagnosis. He wanted first to believe that it wasn't something so serious. Then he wanted to believe that my meds would make a significant difference that things would be like they were before. It wasn't that he didn't believe it was Lupus, it was just very hard for him to come to terms with it all. Good grief, it was hard for ME to deal with the new reality, and I had a better grasp on what this all meant.

For a while he kind of avoided talking about the negative things. He tried to be supportive, but I could tell he was resistant while I spoke of my worries and of my pains. But as time passed, and his understanding grew, and it became obvious that things had changed permanently for me, he came to realize that the best thing he could do was be there for me, listen to me, help me. He is and has been my best supporter through all this. But like everyone, he just needed to absorb the huge change in his own time and his own way.

It wouldn't surprise me if your husband was refusing to tell you how he feels because he is afraid it will add to your stress. My hubby told me this, and I had to reassure him that knowing he was afraid only helped me not feel alone, it didn't make me MORE frightened. It's also possible that he hasn't yet figured out how he feels. It's a very confusing, contradictory sort of thing to try and wrap your brain around! He is your caregiver, and just like he is your supporter, you are his supporter too. You of all people understand best what a struggle he is going through personally. Even if he isn't a talker and communicator, it's important to have that support and understanding. Hang in there, stick together, and it'll work itself out. ::hugs::

Hello, just thought I would share that Ben's Friends also has a caregiver support community that might be beneficial. https://www.facebook.com/groups/caregiversupportcommunity

Talencia- that’s a great way of putting it. And I do think I need to know what he’s feeling so that I know I’m not alone. Because honestly I feel like I am. He tries to help as much as he can but that’s about it. And I have no family or friends here he is my only person here aside from our young kids. So I guess I do need him to express things to me. I’m sure its hard to deal with your spouse having something as debilitating as lupus, but its hard to live it feel it with no support while trying to raise 3 kids :confused:

Thank u auburnm I’ll mention it to him , maybe it will help him get some advice or venting out

Auburnm said:

Hello, just thought I would share that Ben’s Friends also has a caregiver support community that might be beneficial. https://www.facebook.com/groups/caregiversupportcommunity

I think it is best to be totally honest. I always put on a smile and tried to be “normal”. My husband then thought I felt okay and would get frustrated when I didn’t want to do certain things or go on a weekend trip etc. He wasn’t a reader, so never read about lupus and I guess I down played my disease. It wasn’t til 2013 when I ended up in the hospital with some pretty serious problems that he started reading about SLE and what it does and can do to an individual. He was blown away and felt so bad that I hadn’t told him more. I am not saying you have to tell your spouse every little ache, but they need to be aware. I wish I had made sure my husband better understood the disease years ago instead of just recently. Best of luck to you and your family.

My husband hasn't said much about it either. Although I'm not fully diagnosed, it's looking that way, but he is just supportive when I need to talk or vent about it. But he hasn't shared any personal feelings on the matter.