This boy, he told me he can’t love me any more because his heart is too full with his love for me. My heart melts.
(I have been so reluctant to make a photo of him and I public, especially with this recent (cough) internet fame, but he’s given me permission to do so.)
I’m not an inconvenience to him – or rather, my skin isn’t an inconvenience to him. There’s no brushing off my skin from his clothes or wiping the paraffin from his face after I kiss him. I keep saying I will buy him some blotting paper for his face, he said why bother when he will only kiss me again and get oily again.
I believed there was a high chance that I’d live my life single, alone forever. Finding love when you look different is hard. I’m not playing the victim, but I believe it’s a huge barrier – and you have to prove yourself so much more than those who don’t have visible differences. The amount of times I’ve got my hopes up and have been disappointed are too many to count. I’ve never looked normal enough for someone.
And just when I wasn’t looking for or expecting love, I found him. How wonderful it is to love him. He is my gift of love, source of laughter and cure for my skin hunger. His razor is on my bathroom sink and I feel like I’m in a real relationship. Now I’m planning a future with him.
Love is him finding skin in his pockets and smiling because the flakes are portable memories of me.
Love is a morning kiss when my face is unwashed and hair all fuzzy – when I feel my least beautiful. He says I’m beautiful all the time.
Love is switching to sensitive skin products that I can use, in case he hurts my skin when he holds me.
Love is involving himself in my community, planning to attend a dermatology appointment with me, and asking questions about my skin out of genuine curiosity and compassion.
Love is holding my hand to stop me scratching at night, and appreciating – not complaining – that my stupid unregulated body temperature means I’m a heavy duty heater in bed.
Love is wanting to look after me when I’m sore, even when I am well practiced in looking after myself alone after all these years.
Love is his big heart, beaming smile and warm arms, waiting for me at the end of the day.
To those people with Ichthyosis or other visible differences and disabilities: I can’t say you will find love like I have. But there is hope. There are people who won’t look past, but embrace your differences. They’ll love you for everything – even the skin you exuviate. I look at others with Ichthyosis who have found love with sheer joy, knowing that they’re lucky ones too.