I think the hardest thing about mast cell disease is the randomness of it all. For me, at least, it can be hard to predict what will set me off. I do have a list of definite “no-no”s but it’s pretty short compared to all the “what if”s or “maybe this time”s.
It took me forever to trust myself that this was happening and that I wasn’t crazy, too. I gaslit myself for years even after my dx because I just didn’t want to believe it. Eventually things got worse and I had to accept it and then change my behaviors so I would stop triggering myself.
I still get random attacks, usually not as bad as before though. Instead of full blown degranulation from head to toe, I will have patches of hives or my throat will close up for no apparent reason, forcing me to use Nasalcrom and Gastrocrom in an attempt to open it back up. Thankfully both work so all I have to do is squirt some back there and it lets up before it goes too far and I can’t breathe.
It’s still scary when it happens. No one is prepared to suddenly have their throat close up for no good reason but now that I know it can happen I can stay prepared.