Hi faith. yes, this is something we all have a problem with. Its hard to see why but I am guessing it is because we dont look unwell.
Mt mother and siblings have more or less ignored me and my illness from day one.
But you are not alone with this as I m sure other posts will follow saying the same thing.

An idea might be to get him to read some posts. To see that yes, it is real and more than you suffer.
There is also a great story called "spoons" and it really helps to explain how we feel.
If you go back on the old posts, I would say a few months, you will find the link. I will try and find it for you .

I know this is hard, but we have to try and understand were our partners are with all this.
Here they are, living a good life with their partners and suddenly, they are seriously ill. But! No one has heard of it before and there is so litrtle information avalible.

It must scare the life out of them. And feel so helpless. There is not much they can do for us, except support.

If at all possible, get your husband to go with you to your apts. It seems silly but when they hear the dr talk it makes it more real.
Try and keep the lines of communication open between you.
My husband and I have a deal, he must look like he is listening, but he doesnt have to hang on my every world.Sometimes, I just need to say things out loud.I need him as a sounding board. But , at times he cant take it any more. Its the same story, just a different day.

I used to get upset with him and felt he was being selfish, until I realised he was as scared as I was but in a different way. Our men like to think they are our heros, they will fix all the woes in our lives and then suddenly , they cant. You now belong to the hospital and drs.

What you are both going thru is normal, you have to readjust to your new life. Its hard, no doubt, but at these bad times, rememeber why you married him!

I do hope things get better for you, in every way. Cath.

If you type in The spoon Theory in to Google , it will come up. Sorry! but I dont know how to copy and paste yet. Cath.

What worked for me was having my family members go with me to the different Dr Appts, When they heard the concern from the Dr's then it was like a light went off for them and they understood.

I have had my son take me to a neuro appt, My Husband took me to a Opthamologist appt, and my daughter took me to a neruo optamologist and neuro surgeon appt. Made all the the difference in the world.

My poor hubby has been worried sick. I try not to copmlain too much, its always the same - that is why I love that I found you guys. Yuo don't mind if I whine and complain and if I'm having some really scarry stuff ging on, I know I can tell you without making hubby add to his collection of ulcers.

I'd say difenitely take him to NO appt - when he sees them baffled and worried, whispering in the hall maybe he will understand. I have to make my mom and hubby sit in waiting roomo now - they cnat take it. My neuro likes me to bring someone along because one she likes to aks their opinion on how im doing which they think is worse than I do and two, I can''t remmber directions. NO goes out and gets someone to explain things to when I'm done per neuro's ordres. (before all this I was a intellegent competent woman, now I'm like a goofball wondering aimlessly in the dark - topamax and paps)

IH foundation has some good info on thier wbesite ihrfoundation.com - print it out, it may help him understand

Thanks for all your suggestion.