Here are some things you might want to try to get him to feel more in control:
- Don’t tell him all your fears about Lupus from the beginning. It might scare him. When he’s more comfortable with it, start telling him.
- Try to be positive around him and have a smile, even when you’re at your worst health-wise. For me, I’ve noticed that if I’m in a good mood, even when I’m at my tiredest and worst health-wise, and even if my husband is frustrated at Lupus, it helps him know that I’m okay.
- Let him know how he can help. When my husband knows that I need him to sit with me for a little bit or give me a hug and he sees the difference it makes to me, he feels like he did something huge (which he did).
- Thank him for the little things that he does and tell him how much you appreciate what he does for you. When he feels like what he does is helping, it’ll make him feel more in control.
- When he does get moody, try to make him feel better and avoid talking about Lupus then
- When he’s in a good mood, talk to him about how it makes you feel when he shuts you out, (and try not to make it feel like you’re blaming him)… and ask *him* how you can make it happen less often… also ask *him* if there’s anything you can do to make life better in general (except things you can’t do physically).

I don’t know if what I said makes sense (it did in my head), and I hope it helps.

I hope things go better with you and your hubby.

I wish I could be more help. I know how hard it is to talk about serious issues with your spouse.

The saddest part is that when we aren’t arguing, when things are going good, it’s nice. My lupus may flare but it doesn’t generally get completely out of control to the point where it totally incapacitates me; however, when we have bad times it is all I can do (sometimes I fail) not to lose it to the point where I collapse under the weight of the harshness between us and the flare’s ability to butt into my life making it worse. Things were difficult enough before lupus. I mean we had finally got to a point where he was getting used to the idea that my vision was fading and there was nothing that could stop it. Then, this little gem dropped in my lap and it has been as if my world blew apart all over again. It is even more difficult because of his juvenile diabetes. He is moody and often his mood is contingent on his diabetic sugar levels. I don’t always catch that his irritability is the result of his sugar levels. All I see is the man I love ripping at the fabric of our marriage. I hope he will come around soon then it will be easier to tell the irritable him from his health and irritable because he had a bad day at work without the Mr. Hyde showing up instead of Dr. Jekyll after he stressed over my health condition. I never know which man is coming home each evening.

He actually does take me to my doctor appointments. He has been in the examining room once when I was in a flare. The nurse set it up so he could hear the doctor discussing lupus to make it more real for him and give him the opportunity to ask questions. It helped but only to a certain degree.

I would like to think that I’m always understanding of how my wife is feeling, but I know that is not the case. Some days are very hard for me. Lupus is so difficult to understand, and your husband may not know where to begin.

I learned a great deal by taking notes at my wife’s doctor visits. We have a four hour drive to UCLA once every six weeks or so to visit her rheumatologist, and we usually take that time to discuss her symptoms and the situation. This usually ends up in some type of an argument, but we’ve learned that this comes from our own frustration with the illness and not with each other.

I wish I had more to offer, but I still struggle with being able to say the right thing at the right time. It’s a very difficult illness to understand.

The day I told him I had lupus, he called me a liar. It has taken a number of years to get beyond that one. He believes it now but I don’t think he believes the symptoms are so bad even when he is there when I am at my sickest. He is there when the audible thermometer is ticking off the 101 to 103 degree temperature. He knows I am sick yet something in him refuses to allow him to show me just the tiniest bit of understanding and compassion. Instead, he often comes home complaining about what hasn’t been done instead of focusing on something I did do. Or, he comes home ssniping about everything until he causes a fight that puts us on opposite ends of the house for yet another night, which of course ups the stress anty and makes me even sicker. I don’t understand and it is driving me mad. I am the one with the disease yet he can’t bother with a little bit of kindness or a few minutes of understanding. This isn’t as if I am asking for the Holy Grail or anything.

BTW I printed the Spoon Theory out on computer paper, stapled it in the corner so it would stay together. I tucked it in the fold between his wallet folded in half with a note asking him to read it for me. He left it sitting in the valet dish for two years until finally throwing it out – still unread. Now that hurt more than any words or actions. Not only does he appear to not want to show comfort or care but he doesn’t want to learn anything about the disease either.

I am beginning to wonder where we go from here.