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…”

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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.


I usually tell anyone that I have Nerve Damage, causing my Face excruciating or exquisite pain. Like a taser, slamming in your face at random times.
The usual response is “oh shit, sorry”

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I love that! Your wife sounds very clever - thank you for sharing :slight_smile:

Thank you Tiffany - I like that one too. It is short and concise but really says it all. I get so frustrated as I feel like I am always trying to be NORMAL and smile, et. and it just doesn’t work sometimes! Thank you again!

:slight_smile: it is a challenge. I noticed that using the Medical Term made people’s eyes glass over. With a shorter answer, they have the chance to open a conversation if they want. I’m all about awareness, and am pretty open with people.