When I was about six, I started to attend dermatology conferences.<\/p>\n
The doctors would look at me, discuss me, and I wasn’t able to say anything because they had to diagnose me based on appearance alone.<\/p>\n
I’d lay in a cubicle \u2014 sometimes with thin wooden walls, other times just with a sheet on a rail \u2014 and wait for doctors to come in and observe me.<\/p>\n
I’d lay under a white hospital-issue cotton waffle blanket, wearing nothing but underwear and one sock. I was cold, a specimen, no more than a diagnosis. They didn’t even say my name.<\/p>\n
![\"Carly](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/06\/ad8e9c374f4a31d4686524e1771e880b.jpeg\")
<\/p>\n
Carly Findlay pictured as a child. (Supplied: Carly Findlay)<\/p>\n
I was alive, but I may as well have been a cadaver.<\/p>\n
Sometimes I would charge money for a look \u2014 like a medical peepshow. I could never do this as an adult, but childhood cuteness and bravado made me a few dollars.<\/p>\n
Outside of the conferences, I would participate in medical photography. We went down to the hospital’s basement and followed a long red line down sharp corridors to a cold photography room. I stood, near naked, shivering in front of the cameras.<\/p>\n
The doctor instructed: “Just stand still for the photo. There’s no need to smile.”<\/p>\n
It wasn’t until my breasts budded around 12-13 years old that I knew I didn’t want my body stared at in this way.<\/p>\n
Once, a woman, much older than me, came to lunch with my mum and I after a conference. She too had ichthyosis. She was on some strong drugs \u2014 they took the redness away from her skin, but her internal organs were ruined. Liver failure, I think. Moon-faced from steroids. She couldn’t have children while on the drugs.<\/p>\n
It was then that I realised I didn’t want that for me.<\/p>\n
I’d take a cure for the pain, but I wouldn’t take a cure for my appearance. This is who I am and why should I change myself to make other people more comfortable?<\/p>\n
I loved my body, even when it was expected I wouldn’t get to love another.<\/p>\n
It was assumed my husband took me on when we fell in love. But he sees me, he loves me. And he loves my body too.<\/p>\n
But finding love with another \u2014 and marriage \u2014 isn’t my greatest achievement. Loving my body despite all the shame I once felt is.<\/p>\n
I loved my body at the scariest time of my life<\/p>\n
When I was 42, I was shocked by a double cancer diagnosis<\/a> \u2014 ovarian and endometrial.<\/p>\n I required surgery to remove tumours and my uterus, which then caused early menopause. Further treatment followed.<\/p>\n