Yeah... I'm still experimenting with that one
What I tell my co-workers...
"I have a lot of allergies"
What I tell my friends...
"I have an autoimmune disorder that makes me super allergic to lots of things" (more if they're interested)
What I tell my family...
As much as they can stand, focusing on how I feel (nauseated, tired, in pain, dizzy, etc...)
What I tell most doctors...
"I have an anaphylactic disorder triggered by things like heat, sunlight, blood thinners, latex, certain foods, etc..." (followed by as much information as they need/want... which is often not much)
What I told my life insurance company(!)...
"I have a rare disorder called "mast cell activation syndrome." (I figured... let them try to understand what that means!)
The tricky thing is people who cross the colleague/friend divide. I want people to know why I'm tired all the time, have so many food restrictions, take a lot of medication, etc... but I also don't want them to make assumptions or feel afraid/sorry for me
Most people... including most nurses/doctors... have no idea what a mast cell is and will not understand the science behind MCAD. I've learned not to waste my time. The only people I use that term with are mast cell specialists and mast cell patients.
Heather