When I was growing up, I just wanted to be normal. I wanted to have smooth skin – in any ‘normal’ skin tone other than red. I wanted to have my hair plaited by the girls in my class and be invited to more parties. I hoped that others would stop being too afraid to touch me and I tried to win my not-really-friends over with Christmas gifts from the discount store.
It was so hard being different. I wasn’t disabled enough to get the assistance I needed at school (which was a private space to apply my creams and to be able to sit indoors and read or do craft while the other students swam or played sport). But I was just disabled enough for my peers to call me names, leave me out of activities and avoid sitting on the seat I’d just sat on. Teachers would ask me whether I was telling the truth about being bullied. My parents sent me to a church youth group so I could have the chance to form friendships outside of school. But when members of this youth group told me I was a sinner because I am not baptised and because my parents have black and white skin – and that’s why I have red skin, I left. I didn’t understand how my parents could love me so much when I didn’t feel loved by others.
Because of my condition, for several times a year for two or three weeks at a time, I was in hospital when my skin was severely infected – I was administered wet dressings. There I only felt comfortable among people who accepted and understood me when I was in hospital. I remember telling my parents I’d rather be in hospital than at school because nurses, doctors and other patients liked me when I was there.
When I turned 17, things finally changed. It was my final year of high school and little did I know the years of feeling alone were almost behind me. It was the year I got a job, working at a department store for six hours a week after school. It was the year I learned there was a wider world out there – and people were nicer than I’d experienced at school. Perhaps it was because they had a workplace code of conduct to follow, or maybe they were just genuinely good people. There at the department store I made friends that I still have to this day. I only wish I’d started working at the department store earlier. I developed valuable life skills there: customer service, prioritisation, leadership and managing work and study. Most importantly, I learnt how to handle questions and comments about my appearance in an assertive yet professional way. I worked at the Department store for four years, until I moved to a city three hours away to commence a different, full time job in a music store.
I had just turned eighteen years old and being in the new environment, I was fairly timid. ne day before my shift, I was in my uniform at queuing up to buy a CD in the music section of the department store I worked at. Music was my life then, and so I had many CDs. In that moment a customer asked me something because he recognised me as an employee. Then another customer noticed me and referred to me as ‘the lobster over there’. I was extremely upset, but I also didn’t know how – or even if – I could speak up about him calling me a lobster. And so I met with the store manager – a big deal for a junior employee. We talked about ways I could handle customers’ questions and rude comments. I was able to be politely assertive and I had the choice in passing the customer onto a colleague if they were really rude. I didn’t have to work on the main checkouts where questions about my appearance came as quickly as customers’ items on the conveyor belt. This was one of the most empowering things to happen to me. I was given permission to take control of how others reacted to my appearance.
Fortunately, these days I don’t think I need to turn every question, comment, stare or taunt into an opportunity for education. Admittedly, I still don’t like how strangers feel they can intrude on my life by needing to know “what happened?” or why my face is red. Sometimes they ask me about my appearance before they even say hello. I get asked if I’m sunburnt, told I should use aloe vera and I notice people staring metres away. So rude!
The reason why people ask about my appearance so much – because I have a rare, severe, genetic skin condition called Ichthyosis which makes my skin red, scaly, itchy and painful. I was born with this condition, my parents don’t have it (nor did they know anything about it prior to my birth) and there is no cure – no matter how many ‘well meaning’ recommendations or prayers people give me. The condition is medically challenging (when it gets really bad, I go into hospital for wet dressings and intravenous antibiotics) and also socially challenging, as I’ve mentioned.
But I’m not suffering from Ichthyosis. I’m living with it. Thriving even. I work full time. I’ve forged a writing and speaking career – I’ve been published by publications that I read and have spoken at Australian and British writing and medical conferences. I’ve won some awards (last year I was named as one of Australia’s 100 Women of Influence for my work around diversity). And I’ve connected a lot of people with Ichthyosis through writing my blog. In May this year, I organised the first Australian Ichthyosis Meet, bringing together 75 patients and family members affected by Ichthyosis. 25 attendees had Ichthyosis. Some of the attendees had never met anyone else with the condition before. This event was life changing – my parents tell me it was the best day of their life (and it was mine too!). I’m getting married next year – something I’d never thought would happen. Adam, my fiancé, is the most loving, understanding man and I am so lucky to have found him. While my skin and cream gets all over his clothes, he tells me he likes finding my skin in his pockets because it means he carries me with him when I’m not around.
My difference is a gift. It’s afforded me so many opportunities – and I’ve met some amazing people. And now when I look in the mirror, I am so happy with the way I look. I never want to blend in.
Carly Findlay is an award-winning writer, speaker and appearance activist, living in Melbourne, Australia. She challenges people’s thinking about what it’s like to have a visibly different appearance. She blogs at http://carlyfindlay.blogspot.com/ and can be found on Twitter @carlyfindlay and Facebook.