The last couple of days I've made a change. I decided that I would try to get dressed everyday. I know getting dressed plays into my mood. Feeling physically bad leads to feeling mentally bad, leads to feeling physically bad, leads to...it feeds off itself. Feeling bad I am more inclined to stay in my pjs all day. The effort involved with showering and dressing is hard to explain if you're not chronically ill. But it's enough to know that it's prohibitive, and soon my appearance mimics my mood and body. When I get stuck in those ruts I feel worse and I really have to fight my way back out. When I put up the first photo yesterday I added a bracketed message about why I was't smiling.
Today when I shared the Instagram post on my Facebook page I wrote the same message....
(Can't smile as my facial muscles wont cooperate today, Mr Grumpy always says that it's my 'tell' when my face is flat and expressionless. Joy.)
....and it irritated me.
I've stewed on it all day. Why did I write it? Why am I apologising for something I have little to no control over?
The reality is that it's a physiological issue. Since I became ill I have developed progressive issues with my facial muscles. Initially, it began with a left-sided weakness that would appear when my symptoms were flaring. The left side of my face would become lax. I'd end up with ptosis and my mouth would droop (my delightful children called it Stroke Face, and it was always an indicator I was really unwell). When my overall symptoms improved, it would improve.
Soon the sensation on that side was permanently affected. It felt swollen and tingly. When I touched the flesh of my cheek it felt odd. Soon the droop stopped completely resolving. Now it is more obvious even on good days, becoming worse again when my symptoms flare. My eldest son, a photographer, took a photo of me last year and the difference in the muscles of my face was clearly evident when I attempted to hold my mouth shut. A wasting on the left, not matched on the right. A wasting in muscle that was matched by increasing weakness. The more I concentrated and tried to force the muscles the worse they behaved. From chin to hairline none were doing what they were supposed to do.
A Single Fibre EMG (SFEMG) revealed myotonia in the left side of my face two years ago. Since that time my control of my facial muscles has slipped. I try to smile and I can't. Or I grimace. When I force my muscles into positions they jump and twitch. The top lip on the right side of my mouth curls up spontaneously. Every now and then I get lucky. But the frequency is decreasing and the pain it causes in my muscles on the left is often not worth it. Unconscious smiles occur, but try to force one for a picture and it becomes increasingly difficult or impossible.
Mornings my face is blank. No expression. I rub my facial muscles and move my jaw to wake them up, but it can take hours. I find myself absently moving my jaw side to side, up and down, constantly trying to shake the weird sensations and get the muscles to comply. Some days it'll remain expressionless from sun up to sun down, no matter what I do. Apparently the complete lack of facial expression is the family's new indicator that I'm not doing well.
I look grumpy or blank. Not by choice. By physical pot luck. And still I apologise and explain.
There is such a pressure to smile in our society. Especially if your'e female. If you don't, you have Resting Bitch Face (RBF). I think about celebrities like Kristen Stewart who are constantly criticised for their lack of smiling. Hell, I've made comments myself. Now I sit here typing and I can see my own RBF reflected on the screen and I think, enough.
As a woman you are told constantly how to behave and what you should look like. Like many others I've heard many variations of the classic line, "Smile, love. It can't be that bad". Or another favourite, "you're so pretty when you smile". Because as women we are supposed to smile, no matter what. And if we don't there is something very wrong with us.
I know I've internalised that line of thinking.
I know every time I apologise for my lack of smiling,
or look at a picture and my internal critic goes into overdrive at my grimace or RBF.
Time to say, enough.
Enough of beating yourself up for what you can't control.
Enough of feeling self-concious for not smiling.
Enough of explaining.
Enough of apologising.
The people who know me, know I'm a happy person.
And those who don't and judge, don't matter.
If not smiling is the worst thing I do, I think I'll be okay.
*The idea that as women we should always smile is so ingrained in our society and I am not alone in being over it. Check out the Stop Telling Women to Smile campaign and art series.
Anyone who's read the blog for any length of time will know of my love of PJ Harvey. Her songs are so raw and unapologetic and my song choice for today is no different. Sheela-Na-Gig is unapologetic in composition and lyric, and fits my unapologetic mood today. As much as I hate using wikipedia as a source it has a reasonable explanation of the meaning behind the song, here.
We just can't win can we? I get the opposite for smiling TOO MUCH so obviously I can't be sick. It has got to the point where I have to take MPS to doctors appointments with me so I don't get dismissed by them because I am 'too happy' (defence mechanism perhaps?)ReplyDelete
Every video/picture I have seen of you you have a very welcoming expression, so no need to worry about RBF just yet I think...
Your words make me smile.ReplyDelete