Today I sent off my article drafts for Rare Disease Day to the women I had written about, bar one as I’m still drafting it (Amy yours is coming soon). It surprised me that these wonderful women, one thirty- something and one forty-something, are guilty of being too hard on themselves. They battle their myasthenia with courage and humour, but described their frustration, about the havoc myasthenia gravis plays on their appearance, as vanity. Three generations of women are being unjustly tough on themselves.
Let me explain – when I did the interviews for these articles a couple of weeks ago, they were both embarrassed to tell me that the thing they find hardest about having MG is how it affects their physical appearance. One of them hates her MG smile and the other hated the droopy eyelids.
Vanity as a sin
Women are brought up in this country to believe vanity is the worse of all sins, while, at the same time, we are judged on our looks frequently. I know men are increasingly being judged in this way too, but I believe it to be aimed more consistently at women.
As I write this, I just read the latest ‘story’ in a long line about an older actress ageing – the beautiful Uma Thurman was the victim of the trash talk on this occasion. I struggle to recall a male equivalent of this kind of media abuse.
As children, we are told not to look at ourselves for too long in the mirror, yet from that time onwards our appearance is often the first thing people comment on or criticise. Sadly, other women, of all generations, are often our harshest critics.
Lack of empathy
One of the lovely ladies I interviewed told me that people had absolutely no qualms asking her ‘oh my god, what’s wrong with your eyes’ and ‘why do you look like that?’. Sensitivity and tact often go out of the window when it comes to women and appearances – so imagine yourself in that situation and tell me you wouldn’t prefer to have internal symptoms rather than external. Because they are easier to hide, they can be easier to forget.
The thing is people stare when something catches their attention/ doesn’t look normal – even in polite London eyes linger that bit too long. On a good day, you still notice this because it’s a direct challenge…why do you look different?
This attention reminds you of the temporary deformity and, in turn, makes you less likely to want to be around people you don’t know and trust. Outward symptoms make you turn inward to hide. So a confident, outgoing, person who knows their value in the world can start to doubt themselves and all they have is hope that the symptoms will pass soon.
I probably pay closer attention to how I look in the mirror now than ever before, but it’s not vanity that drives me. It’s a way of tracking how bad my symptoms are, because on days where my eyes look close to normal, I know everything will be easier. Today was better and I found posing for this photo less difficult.
One of #myasthenia Twitter gang posted the below picture a few days ago and I think it speaks for itself about the impact of the drugs we need to take on our bodies.
Women, with or without MG, can we do ourselves a favour? Unless we reclaim the word as a positive thing, can we stop referring to ourselves as vain like we have just admitted adultery or theft? And women with MG, can we stop misusing this word? We aren’t vain – we are grieving.