I have been open and honest so often I am sick of it. I try not to say much any more. I am told that I need to just not "bring up the bad"
I don't mean to intrude on your space; I'll just say this and then I'll drop it.
From some of the things you said, it sounds like your husband is giving you a free pass on your illness. True, it's a big complication in your married life, but presumably he won't hold it against you if
you don't make it an issue. (
"I am told that I need to just not 'bring up the bad.'")
I had an INFJ boss for many years. One time one of my subordinates screwed up badly, so badly that I had to kick the mess upstairs into my boss's lap. It had repercussions that complicated my boss's life for a while, and I felt bad about it. It wasn't my fault at all; I did everything by the book. But still it created quite a mess for my boss.
I was very apologetic to my boss repeatedly and moped about it a bit; I felt guilty in that I might have seen it coming earlier and headed it off. In turn, he reassured me a couple times that there was nothing I could have done and that he had every confidence in me and was prepared to back me to the hilt.
One day I was moping and apologizing to him for the fourth or fifth time, and he blew up at me in anger. He said, "I told you that I would back you on this. So why do you keep needing reassurances from me? Why don't you trust me?"
After that, I didn't bug him about it any more. I straightened up, dropped the subject once and for all, and went back to being cheerful, chipper, and business-as-usual. And after that, we got along just fine.
I know that my boss had to put in additional time dealing with the incident; once or twice he came to me with updates. But I didn't apologize or anything. I just thanked him for the updates and left it at that. And everything was fine. In later years, he referred back to the incident once or twice, but only to make a joke at that subordinate's expense; he didn't refer back to me being needy or imply in any way that I had fallen short.
All in all, over the years, I learned not to be "needy" around that boss. Any kind of neediness would bring him down fast and get him cranky. He would say, "Don't come to me with problems; come to me with solutions." IOW, if I had a problem, then before going to him I thought up and researched a couple ways to handle the situation; and I presented those solutions to him along with the problem. He would then tinker with my solutions and fine-tune them to meet his needs, and then he would send me on my way. And he loved it. He was delighted that I didn't just come to him and drop raw problems in his lap and make him deal with them cold. I had already done the brainstorming and the research; he just fine-tuned and tinkered.
I also learned to take him at his word. If he said that I was doing fine, then I quit worrying about his opinion of me and assumed that I was doing fine. I think that that was his biggest gripe about people. He picked his words carefully, and he wanted people to hear him the first time around and trust his words to be true.
Also, he wanted things to be upbeat and positive. It didn't mean that he wouldn't listen to bad news. After all, there were tough assignments and problems all the time. But he wanted me and the other lower managers to be on the same wavelength as him. So once he had delivered a verdict, then he didn't want to hear any more moaning and groaning about it. He was perfectly willing to bear his fair share of the burden or even take the majority on himself--he was more than fair in that respect. But the trade-off was that he didn't want to hear neediness and negative vibes. That would just drive him nuts and bring him down.
So extrapolating from my boss to your husband: It may be that your husband is perfectly willing to put up with your illness, and he may feel that he has given you more than enough reassurances that he won't hold it against you (and he probably means every word of it). But in return, he doesn't want to hear negativity about it: "Don't bring up the bad."
And if he feels that you're moping about it or that you don't trust his reassurances, that may be when he withdraws from you--because those things would probably hit him pretty hard, judging from the example of my boss.
He's asking a lot of you, of course; it's probably pretty difficult for you not to be negative about such a debilitating illness. But FWIW, if you can trust him to keep his promise to be tolerant of your illness, and if you can otherwise be upbeat or at least not be overtly negative about all the ways the illness is affecting your life, you may find that his overall mood will improve quite a bit.
In my experience with my boss, my boss's mood was very much affected by my mood. Problems came and went, and sometimes the problems were big ones. But as long as I kept upbeat and positive about things, he stayed upbeat and happy too. OTOH, if I got down in the dumps and complained about even small problems, it pulled him down as well. And if I was negative for any length of time at all, he would avoid me altogether or get stressed out and start fussing at me.
I'm still not sure if that was just him or if it was all INFJs. But with him, I felt that his mood was largely a mirror of my mood. I had a tremendous ability to affect his moods positively or negatively, so I had to be careful and deliberate about how I presented myself to him. He was always in my corner, as promised, but in return he expected me to keep things upbeat and on a positive note--because my moods had such a big effect on his moods.
By the way, I worked for that boss for 11 or 12 years, and I was in his office doing business with him at least once or twice a day (and often many times a day). My office door was 10 feet from his, so we interacted all the time. Overall, I would say that he was the best boss I ever worked for. The only trick was to watch out for the mood thing.
Oh well, that's just my own experience with INFJs. Good luck, Heart!