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.
And so I only felt 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 people liked me ther
But it was when I turned 17 that things changed. 17 was the final year of high school – the end of feeling alone was near. 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 learnt 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 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 there for four years, until moved to a city three hours away, and I only wish I’d started working at the department store earlier.
One day before my shift, I was queuing up to buy a CD. Music was my life then. I think I’d just turned 18, and was still fairly timid. A customer asked me something – I was in uniform so he recognised me as an employee. And another customer referred to me as ‘the lobster over there’. I was 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.
And so today, I don’t think I need to turn every question, comment, stare or taunt into an opportunity for education. I 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 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 in a corporate events role. 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 almost never want to blend in.
This post was originally written for Meg Zucker’s blog, Don’t Hide it Flaunt it.
Also, I’m so excited to be speaking at the Digital DIY Day at the Melbourne Writers Festival next weekend. You can get a 10% discount to the following session on the weekend –
Enter the code DIGITAL10 here:
The code is valid for the following Digital DIY events (it’s not valid for Digital DIY workshops, seminars or keynote events):
How to be Creative
Writing for a Cause
Bringing Your Brand to Life
Creativity & Motherhood
Writing Your Life (mine!)
The Business of Writing
Sarah Wilson: Creative Entrepreneur
Community Channel: Finding Followers