Carly, Who has Ichthyosis, Blogs to Educate Others
January 28, 2013
I am a writer and community TV presenter. My day job is working for the Australian government in communication and events. I live in Melbourne, Australia. I love live music, fashion, writing, cooking and eating. I have just finished my thesis which completed my Masters of Communication. My thesis was on blogging and the way it helped shape my identity. I have a lifelong genetic skin condition called ichthyosis form erythroderma– meaning scaly red skin. It is painful and itchy and I have spent lots of time in a hospital, waiting for dermatologists as an outpatient and as an inpatient. Ichthyosis is socially challenging: I’m stared at, questioned and commented on my appearance each day.
I’ve had a blog, Tune into Radio Carly for three years. I’ve had a few blogs over the past 12 or so years, but it’s this one I have taken most seriously. I have been able to practice and refine my writing and story telling skills. It’s given me so many opportunities– freelance writing (for the Victorian State Government, MamaMia, The ABC’s Ramp Up and The Hoopla), TV work, band reviews and interviews, speaking events for medical professionals and young people, many friendships and some really exciting work with companies that shape people’s attitudes towards appearance. The Centre for Appearance Research at the University of Western England found my blog and asked me to speak at their Appearance Matters conference last July. It was amazing to be discovered that way and to speak internationally.
I have wanted to educate people about what it’s like to look so physically different. In the street, people see my red face only and don’t take the time to look past that. They will judge me on being sunburnt, stupid in the sun, a victim, or a freak show. They do not know the extent of this condition. But writing a blog enables people to get to know the real me. They can read about the pain, the good things ichthyosis affords me and the ignorance I encounter, plus all of the other elements of my life– food, bands, fashion, heartbreak and humour. My blog also helps educate people with ichthyosis and also parents of children with the condition. I’ve had many parents tell me my positive attitude has given them hope for their children’s future.
The best part about blogging about my illness is that people feel comfortable enough to open up about their own struggles and achievements. I receive such lovely comments from readers who tell me they have been inspired to be more open and confident about their illness or disability, or that I have helped them in some way. I had two readers write to tell me I had helped saved their lives. That is a big privilege. I have also had readers email me to tell me they’ve shown my blog to their children to teach them about diversity. I also got to judge a disability focused film festival and be photographed by an international fashion photographer, Rick Guidotti, who specializes in taking photos of people with visible differences. Oh and going overseas (because of my blog) was pretty exciting too!
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