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

I've been saying I have an autoimmune mast cell disorder that makes me tired, unable to breathe, and made me allergic to all foods I used to eat.  The response is "Oh I've never heard of that".  My response "Neither has my neurologist, cardiologist, neuropsychiatrist, orthopedist, gynocologist, primary care physician, rheumatologist, allergist, dentist, opthamologist".  LOL.

I've also said I have a lupus-like syndrome.  People understand that.

Oh, my gosh, too funny PJP!

Great question with great answers!  I've been saying that part of my immune system is malfunctioning and reacting to things it shouldn't be, resulting in my getting sick.  But, I like these other suggestions so much better!  Will definitely use some of these ideas.

I find the worse part of explaining MCAS (to whomever) is that I hear myself talking and I think the listener must think I sound like Charlie Brown's teacher...WHA, WHA, WHA....

Julie

I think I'm sticking to this one which sometimes brings a smile and lessens the intensity of the situation a little.

Some of my cells get really pissed off and they start a fight inside me.  Sometimes I win and sometimes I loose.  My EpiPen is my light saber.

Thanks to ALL of you, I declare this: "I CAN'T STOP LAUGHING DAY!!"  

What an awesome group....

I really love the lines that ya'll tell people when trying to explain masto.  My last oncologist at MD Anderson said its are very rare form of Leukemia.  So when I tell someone I have ASM and I get the blank stare I just tell them that.  It really stinks when you go to the ER and have to explain it all to the doctors and they have no clue what your talking about and you end up telling them how to treat you.  My husband had a argue w/an ER doc because the doc didn't believe I was having a severe anaphylaxis because I could still breathe.  Jeesh.  Some nurses have no clue either.  One time after my bmb and aspirate at MD Anderson I woke up w/a reaction to fentynal and prophynol they give you to knock you out,  My husband argued wj/the nurse to give me epi and when she said it wasn't anaphylaxis (again) because I could breathe he broke out the bottle of liquid benedryl from my bag, the nurse called my Oncologist who was upstairs and he confirmed it was anaphylaxis and she had to give me the epi pen.  the doc told me later that they were going to have a meeting with nurses and explain that even though you can breath does not mean its not anaphylaxis for masto patients.

OH Lisa;
I'm laughing & crying at the same time ! You know my "issue" right now... Well this morning, we discovered someone had hit our beloved "outside"cat-Spanky. My son was coming home from a 12hr. shift & saw him. We were digging as hole in 90* weather. I remembered your 5lb. rule- n told my son to make a bigger hole under our statue of the BVMary- m thro my butt in w/Spanky if anything "happened". I thought the very same thing- LIFE HAPPENS. We have to treat everyone, and every day as though it's our last. I'm tryin.Meanwhile, I'm still workin on being kind to the people that think I'm "catching"....
lori