Living With Facial Pain

What do you say when people say "why don't you smile?"

I have had two MVDS (one each side) and although I am able to smile, the left side of my mouth/face droops when I am tired or flared.
What do you say when people ask “why don’t you smile?” or “what are you so mad about?” Sometimes I want to just scream I HAD TWO BRAIN SURGERIES I AM NOT ANGRY AND AM DOING THE BEST I CAN - PLEASE BE KIND!!! Any advice or clever comebacks that I could use?

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Why wouldn’t it work to say “the brain surgeries have impacted the nerves in my face that control my expressions.”

I think what you said is just fine–but you don’t have to scream it. It is obnoxious and intrusive for people to say things like that, but I don’t think it is mean spirited.

Something else just crossed my mind – do you notice just before someone says something? Are they looking at you longer/differently or something like that? If so, you could cut them off in a wonderfully passive-agressive way with a question along the lines of “What? Do I look funny? Those brain surgeries really affected my face…”

I can relate. My wife made me a couple of pictures I can hold up to my face either laughin etc… got to have a sense of humor :slight_smile:

I wish we had nice big emojis to click … this will just have to do: :rofl:

You’re right, Andy. A sense of humour is essential to survive what rare disease peeps have to endure. Glad you’ve got yours.