It’s Face Equality Week, the theme is “we will not hide”.
Face equality is being visible for other people with facial differences, skin conditions and disabilities; and being available for them and their families and friends.
I know it’s not my job to be a teaching moment all the time. But I do believe that my job is to be there for people with facial differences and skin conditions and disability, and their families.
Today I met Sarah and her tiny little baby L. L is two months old. Late last year, Sarah sent me a message on Instagram, saying her pre natal tests showed that her unborn baby has ichthyosis. She knew nothing about the condition and wanted to be prepared to give her son the best
This is amazing allyship.
I messaged Sarah back, congratulating her, sending her info about dermatology clinics. support group links and some reassurance that it will be hard, but it will be ok. I asked her and her partner to promise not to feel guilty about passing on a genetic condition. I encouraged her to connect with other people with ichthyosis.
Two months ago her little one was born. She sent me some photos. Today we met. He’s doing great, and so is she. I had the most beautiful cuddle. He’s such a gorgeous boy.
Sarah told me today that she wanted to find a real person with ichthyosis in Melbourne to talk to, and that she didn’t expect me to reply. She said that my reply was so lovely and helpful during a hard time. She bought my book and joined support groups.
We are both so glad we met. I know we will have a long friendship.
I’ve grappled with claiming the term “social media influencer” for a while now. But I feel that I can influence community in this way, by giving them hope and advice. What a privilege this job is.
We didn’t get a photo as we didn’t stop talking (and then shopping), but we will next time.
I will not hide because I want other people in the facial difference community to feel seen and connected, especially the rare ones.
Image: a woman with a red face, short dark curly hair tied back, wearing a grey green jacket over a geometric print blue, orange & grey green dress. She’s smiling standing near a brick wall.