The thing I like most about DiVine is that it allows us to tell our own stories. We can also tell them on our own terms.

It has been my dream to write on a regular, paid basis. Kind of like Carrie Bradshaw did in Sex and the City. But without the string of men and the countless pairs of high heels.

My blog

I started a blog recently. My blog has allowed me to tell my story about my chronic illness. It’s a skin condition called ichthyosis form erythroderma. The blog lets me tell the world what it's like from a personal perspective. It can write without sensationalism and with honesty. I can educate people and enable empathy. I also aim to offer hope and positivity to other people with my skin condition. I also hope to reach people with other chronic illnesses and disabilities.

I'm a writer and events planner in my full time job. I love it. But I really enjoy the creativity of this type of writing.

Some of the things I've written about may have been a little confronting. Even I get a bit sad reading them. But I've always maintained that I'd like to keep my writing honest. Honesty and being in control of telling my story is something I feel passionate about.

Raising awareness without sensationalism

I think it's really important to raise awareness of conditions such as mine. But other than through writing for DiVine, a blog and public speaking, I am not sure how it can be done without sensationalising the topic.

When you tell your story to a journalist, you risk them producing a different story. I cringe when I see articles or television programs featuring sensationalised stories about illnesses and disabilities. I also worry about the damage it will do to the person affected.

You might have seen stories in the media about babies born with unusual disabilities, or a cat with two faces. This sort of coverage sickens me. It really does treat people with body differences and disabilities like they are sideshow exhibits.

Stares and comments

I get stares and comments from passers by every day. But fortunately, the only time I have felt like a zoo exhibit is when 200 doctors converged for a dermatology conference. They came to examine me in droves. They didn’t speak much to me, just poked and prodded while I sat there in one sock, undies and a blanket. When I was a kid, I charged doctors money to look at me. But at age 15, I faked tears to get out of there. That was humiliating enough.

The Medical Incredible television program recently featured sisters with ichthyosis. One of the girls featured is a Facebook friend. But I found it hard to watch. Maybe it was because I identified with the pain they went through. But I think it was more due to knowing the program was sensationalist. It highlighted difficulties in the girls' lives. It was educational and produced with some compassion. Yet I couldn't help wonder whether the show's "gross out" factor was cynically designed to draw in viewers.

Some people who saw the program told me they didn't realise how bad my condition is. They made assumptions that my condition is just the same. When I explain that there are different variations, they believe they've acquired all the knowledge they need. It's really only the person with the illness that can explain the pain and what it means for them on a daily basis. Not their parents, not their doctors, and not the media.

Real Beauty Search

Last year I took part in Fox FM's Real Beauty Search. It was for people with body differences and disabilities to have a chance modelling on the catwalk at Fashion Week. I entered on a whim one morning before work. I didn't think I'd become a finalist.

An hour after I had sent my entry in, my photo was on the website. I panicked when I saw it up there. It was on the front page for five days. It was quite exciting. I also received a lot of support from friends and colleagues who voted for me. I did not win, but I had a good time. More importantly, I got the chance to raise awareness about my condition. I was able to tell my story on the radio for five minutes. The questions asked weren't too intrusive. It was the first time I've given a public address about my condition outside of the workplace. A few people even stopped me to say they had heard me on the radio or seen me on the website.

Strong, inspirational and beautiful

Part of me worried that Fox would use my picture for shock tactics. But I don't think they did. There was also an editorial written by Jacqui Bunting in The Age supporting the concept. The article mentioned me. I was described as one of a group of strong, inspirational, beautiful women.

I have given some speeches at work for International Day of People with Disability. These have been very successful. My colleagues have often been moved to hear my story, unedited and not sensationalised. I have also written a story about myself for my organisation's staff newsletter. I received dozens of emails from across the country commending me on my courage. That feedback made me more open to do public speaking and to share stories about my illness with the DiVine audience and on my blog.

This is the way I want my story to be told. In my own words. Without editing or sensationalism. It's only fair when so many assumptions are made about the way I look before I even open my mouth or tap my keyboard.

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