I am a very social and happy person but with MG it can be hard to physically show that some days as I cannot always smile. Though my energy may be through the roof and I am bouncing off the walls (sometimes literally as I am a fitness instructor) sometimes people may not see it as sincere when you cannot smile with your whole face. Since I smile almost nonstop the more I use the muscles in my face (the repetitive usage) the less I am able to activate them in a shortened period of time. I have to give them rest. Therefore I have to intentionally make myself not smile before a picture until just before people say “3” which can make for awkward pictures. My smile looks like an a toothy ogre like I’m barring my teeth instead of smiling. The sides of my cheeks and lips begin to droop.
Timing is everything. I cannot hold this forever. I tell people if you want a picture, you need to get it when I am fresh, just got to the event and just after I have had my meds (mestinon). Do not wait until the end of the night/ event when I am tired and then try because then I feel subconscious and I know my smile is not what I want it to be, even when they think it looks fine. I hate to be that way but pictures are memories frozen in time and no one likes to feel like they did not look their best. There are plenty of times we believed we looked our best as it was and look back on pictures and ask WHAT WERE WE THINKING?…the 80’s the 90’s and so on, LOL. So why intentionally take pictures where you know they are not worthy because people do not understand or are insensitive to your needs.
I just refuse to take pictures now with a toothy grin (which are my fav) unless I can. When people ask why I say because they did not follow my rules. It’s just not fair to me anymore, there are too many pictures that look strange/ foreign to me. They make me feel sad. I do not like looking at the “sick” person so I will not take pictures like that.