Advanced Cases Should Be Classified Far More Seriously/Be Named Differently

So, as we know, some of us get a worse ‘variant’ of SS, presenting with systemic neurological issues that lead to organ involvement. I believe this kind should be classified differently and given a different name than the SICCA-only kind. In a case as aggressive as mine, frankly, idk why this isn't considered a terminal illness (not to fearmonger, but those who know understand what I'm saying). I'm not 30 yet; I'm as able-bodied as a 90-year-old veteran. I will need a liver transplant in the future and possibly a kidney transplantation as well. I have lost gross and fine motor control and struggle with stairs. My eyes are going to end up blinded by NMOSD. I have heart issues because of this. I will need a colostomy bag soon. The list goes on. Oh, and the 40-fold chance of developing NHL means 4000%, not 40%. How am I not being killed by this? I will need to be in assisted living on all types of tubes and machines to keep me alive by 40 if I make it there. How is that not terminal? If I were to cease all treatment, I'd die. So, again, how is this not fatal?

I want to be clear that I have an unusually aggressive case, and yours likely won't pose the risk that mine does.