14 March 2010

In control telling my story

The thing I like about blogging is that it allows us to tell our own stories, on our own terms.

Having said that, it is my dream for a reputable media or communications company to contact me through this blog and ask me to write for them on a regular, paid basis, a bit like Carrie Bradshaw, in the inner suburbs of the city but without the men or the Manalos (Hello - is anyone out there??!!).

This blog has allowed me to tell my story about ichthyosis. It means I can tell the world what it's like from a personal perspective, without sensationalism, and with honesty. With a view to educate people and enable them empathy. I admit, some of the things I've written about and pictures I've posted may have been a little confronting, and even I get a bit sad reading them over. But I've always maintained that I'd like to keep this blog honest.

What I am going to write about is something I feel very passionate about. I know there may be some people reading this blog with ichthyosis or their family members have ichthyosis. This may offend you as you may see it as a judgment. Deep breath. Ok.

As I said, I'd love to write the way I do in this blog but be paid to do so. I'm a writer and events planner in my full time job, and love it, but I really enjoy the creative, boundlessness of this type of writing, and I think that my readers enjoy my writing too (based on your feedback).

However, I'd never ever be paid (or not paid, even) to tell my story about ichthyosis to a magazine, newspaper or TV station. Australian Story may be the exception.

I think it's really important to raise awareness of conditions such as mine. But other than through a blog and public speaking events, I am not sure how it can be done without sensationalising the topic, or the journalist telling a different story to the one the person with the condition has told them. When I see articles or TV programs featuring sensationalised stories about illnesses, I cringe and worry about the damage it will do the the person affected.

You all would have seen sections in newspapers devoted to babies born with many limbs, or a cat with two faces, or that poor man with the wart condition in Asia, dubbed 'tree man'. This sort of coverage sickens me. It really does treat people with body differences and disabilities like they are side show exhibits.

Fortunately the only time I have felt like a zoo exhibit - other than the daily stares and comments - is when 200 doctors have converged for a dermatology conference and they have come to examine me in droves, not speaking much to me, and poking and prodding at me while I've 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, and it wasn't even media coverage.

Here is an example of a variation of my condition being sensationalised in the media.

Baby born with rare genetic disorder

The public and media treated this little boy like an exhibit of a side show. I feel so bad for him - he had no choice for the media to intrude. If he does survive, I am sure he is not going to be looking back on that story with fondness.

There was also the Medical Incredible TV program featuring sisters with ichthyosis. One of the girls featured is a friend on my Facebook, so I don't want to offend. I found it hard to watch. Maybe because I identified with the pain they went through. But I think it was more due to knowing the program was sensationalist, and highlighting difficulties in the girls' lives. While it was educational, and done with a degree of compassion, I couldn't help wonder whether the show's 'gross out' factors are designed to draw in viewers and reign above educating people and showing what great girls they are.

I was telling Mel in the UK how when some people I know have watched Medical Incredible, or read an article about someone in a trashy tabloid magazine, they have mentioned it to me, told me they didn't realise how bad my condition is, and then 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 from this TV show/article. 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.

Mel has also written a piece on the way the media portrays people with our condition. I have linked to it above. She agrees with me and writes 'My story is just one example of what Ichthyosis can be like to live with, but there are so many different forms of the condition and even those with the same form of Ichthyosis I have (Bullous/BIE/EHK) suffer and cope with it differently to the way I cope and how it affects me'. That is very true, and the same goes for me.

I have read some more positive, less shock-tactic like stories about ichthyosis. Like this one:

Netherton's Syndrome - a mother's story. It is educational and sensitive.

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 modeling on the catwalk. I entered on a whim one morning before work, not really thinking I'd stand a chance in making it as a finalist. An hour after I had sent my entry in, my photo was on the website. I sort of panicked when I saw it up there. It was on the front page for five days. I was able to tell my story on the radio for five minutes. The questions asked weren't too intrusive. Lots of friends and colleagues voted for me. It was quite exciting and I received a lot of support. I did not win but I had a good time promoting myself for votes, and more importantly raising awareness about my condition. A few people (strangers and shopkeepers in my local area) stopped me to say they've heard me on the radio or seen me on the website.

Part of me worried that Fox FM may use my picture for shock tactics, to draw listeners in to the website. I don't think they did, but it was the first time I've given a public address about my condition outside of the workplace.

And here I am!

There was this article written by Jacqui Bunting in The Age that mentioned me. Jacqui writes 'Another welcome venture challenging aesthetic homogenisation comes from our own backyard. In an industry recently tarnished by tasteless stunts and broken promises, a Melbourne radio show is running a competition that will see three Australians with impairments or disabilities take part in a fashion event to promote the idea that beauty is more than tits, teeth, hair and hunger. Entrants include Carly, who suffers from erythroderma, which leaves her body covered in scaly red skin; Dhea who lost all her hair at the age of seven due to alopecia; and wheelchair bound Fatma who suffers from spinal muscular atrophy. All strong, inspirational, beautiful women'.

I have been giving some speeches at work for International Day for People with Disabilities. These have been very successful, and 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 newsletter, which is distributed to all staff. I got dozens of emails from staff across the country commending me on my courage to tell my story. And that feedback made me more open to do the speeches and join ChIPS and to share stories about my illness on this 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.

Edit - I found this great blog post a few days back in my research for my own blog. It talks about the 'freak show' concept of these Amazing Medical Stories TV programs.


  1. Hi Carly,

    as I once mentioned in a comment to you- I also have a disability, something that you probably have never heard of and you would never know about to look at me.

    i always find it SO hard to tell people about it, because it just sounds so much worse than it is- hmmm okay it IS bad and painful, but I find that if I tell them about it all at once it can just seem so overwhelming and they just feel so sorry for me that it's embarassing.

    Like you, I use humour to make them feel better and to explain weird parts of my illness. I guess it is really hard to imagine what it is like for someone else...

    Anyway, I don't really have a question, I'm just sharing!

  2. Hi Carly
    Internet doing crazy things. Have sent a PM.

    SSG xxx

  3. Carly - good on you for putting who you are out there and not apologizing for it or being afraid to do so. You're so brave. I don't have a disability myself, but I can sort of relate as my older sister does. She has down's syndrome so it's a mental disorder rather than physical, but she does have a certain physical look as well so people do know when they look at her that she's "different". It's very frustrating for me when we're out and people point and stare at her, so I can only imagine what it must be like to experience it first-hand. It's so great that you are in control of how you are perceived - you choose to not let people's comments and opinions bring you down and you should be proud of that!

  4. If anyone deserves a writing gig educating everyone about not only ichthyosis but just about a great outlook on life, it's you Carly! :)

  5. Could not agree more with this post. Sickening exploitative media trying to grab ratings under the guise of raising awareness.

    I love and appreciate the honesty of the many blogs I read, and the freedom the medium affords me to tell my story in my voice to my readers.

    Your life, your story, your way, Carly.

  6. In my haste yesterday, forgot the real reason for my post. Another inspiring and well written post. thank you for sharing.

    SSG xxx

  7. I love reading your blog, it's very imspiring:)

  8. Hi lovely,
    Great writing as always!
    That first link re:baby boy... Didn't work.
    It's been a little while since I've caught up on your blog but while I'm not able to sleep and have to be up in 2 hours or so to head in for surgery so I can breath again... I know I'm in for some good reading and certainly not wasting my time. I've said it so many times before, YOU are an excellent writer and artist/storyteller. Your day will come gorgeous.
    Xx Jen.


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