Feeling isolated as husband is choosing not to share his diagnosis with others
My husband was diagnosed with an extremely rare and potentially disfiguring disease earlier this spring. Disease can be put into remission, but no cure. We are awaiting treatment orders and he has to stay away from crowds, due to a very low white blood cell count.
We are in our late 40s, raising two teenagers with their own challenges, working jobs from home, etc.
Husband does not want to tell anyone about diagnosis. We have told our parents and our kids know a version. He says he doesn't care what others think (and I agree!).
Husband is an introvert and would be likely be content with our family as company for the rest of our lives. By contrast, I need my family, friends, volunteer work, church, and other communities.
I am doing my very best to lean on our parents and my new therapist. I have told a few of my closest most trustworthy friends that he is going through a rare diagnosis, but no specifics. That has helped me, but I know even that is crossing the line of his wishes (and I feel guilty about that).
This is his journey, and I want to respect his wishes. I also know that his stance on telling others might have to change based on what treatment road he goes down.
Receiving a terrifying diagnosis at youngish age is already a lonely process, and I'm struggling with how I'm going to keep proceeding through life (wife, mother, friend) and supporting him through treatment feeling very alone in this.
To keep him healthy in the interim, we've already withdrawn from some of our usual family social situations. I'm continuing to socialize with our kids in certain circumstances. But when you stop reaching out to family friends, without telling them why, they start to forget you.
Any advice on how you navigated this rare disease road sanely? Please be kind. Thank you.