I’m sorry that your husband seems to be growing distant and is not wanting to discuss the situation in a meaningful way.
My late husband was very supportive, but he knew of my MS before we got married. Early on in our relationship though he would get frustrated when things didn’t get done and I appeared to be OK at the time. It took a while for him to understand that the symptoms of MS are not always visible and that some of the invisible ones can be the most disabling.
The profound fatigue, localized pain and leg spasticity that I experienced during some MS bouts were things that he had trouble accepting; because he couldn’t see them.

What brought him around was taking seriously his complaints and also taking extra care of him when he experienced “invisible symptoms” for himself. He came to understand that, although his were from different causes, his experiences of suffering when he appeared to be OK, but was not feeling well, were very much like what I experienced when MS reared its ugly head.

I remember a particular time that he developed a terrible headache following extensive dental work. It went on for days and he was incapacitated by it, despite taking medication. He was really suffering because otherwise he was a strong, healthy and robust farmer-type of guy. He just wasn’t used to being “down for the count” as he said.

During that time I made him his favorite creamed soup because he was having difficulty eating and I brought it to him in the living room because even moving from there to the kitchen made his head throb. I also frequently massaged his neck because it was in spasm and took over some of his farm chores.

Even though it was difficult for me because I was going through a mild bout of MS at the same time, he was definitely worse off. He really appreciated the extra care and said so. It was at that point that I told him that although he looked just fine, that I understood that appearances were not always a reliable indicator of how one was feeling, and that I had no doubt that he was suffering by the way his normal habits and behaviors had changed.

It was during/after that episode that he seemed to really understand that when something was going on symptom wise with me, even if he couldn’t see a physical sign of it, that its impact was demonstrated in other ways. When my normal habits and behaviors changed or things didn’t get done, he’d ask if I was OK, or if something was going on.
It was then that I began to tell him how I needed him to help me, rather than go into the symptom list itself.

He told me that when I said I “needed” him to do something that it made him feel good because although he knew that he couldn’t make the symptoms go away, it enabled him to reduce my stress and suffering just the same. He also told me that it affirmed that I needed him…as if that were ever in doubt .

It was odd for me to realize that early in our relationship when I wasn’t feeling up to snuff, that my own drawing away in an attempt not to impact his life also, was in fact excluding him and making him feel inadequate in a way.
So through a process of trial and error, it turned out that rather than putting the emphasis on what may have been going on symptom wise with me, what worked for us was to simply tell him that I needed him to help me with what ever it was that I could not do at the time.

This was not the same as asking him to do something, as in “Would you please make your own lunch and dinner today?” That would have only been a request, not a need. When I wasn’t well, what I expressed to him was an actual need and not a request. There is a huge difference.

Thus when I was suffering with symptoms, it meant that I could not do some things and it could come out like “I need you to look after your own lunch and dinner today.” Or if symptoms were more impactful, it could be more involved like “I need you to take over feeding the horses for a while.”

He came to realize that depending upon what sort of need was expressed, it at least hinted at how severely I was being impacted by symptoms at that time. He didn’t always ask what was going on, but from my side, it didn’t seem to be important that he know; so long as he knew that I needed his help to get through it. When he asked, I told him not just of the symptoms but I stressed what it meant in relation to what I would have difficulty doing on my own. He could understand that way more easily and he spontaneously began to take over some tasks until I began to take them back over as symptoms subsided. It meant more than I can say and our love for each other grew as we became more of a team...a true partnership .

You might try something similar with your hubby. He might be feeling helpless because he can’t make your symptoms go away, so he may be trying to make them go away in his own mind by minimizing them. It is unlikely that he knows how hurtful this is to you, so maybe you can forgive his clumsiness in his trying to cope with your current symptoms and an uncertain future.

Maybe try giving him something that he can do that allows him to help you. That may help him to feel needed and appreciated when you are struggling with symptoms instead of making him feel helpless and excluded.
Doing that may help to take the emphasis off of coping with and accepting the impactful situation of your symptoms and may help to put it toward building a stronger and more supportive relationship.

This may also work with your children, as they too will have to come to grips with times that you may not be able to participate in, or do some things that they would like you to.

With love, Erika