31 May 2013

Ichthyosis Awareness Month: My story.

"Writing about my illness is about getting everything out there so no one else can be uncomfortable about it."

~ Luke Ryan at the Emerging Writers Festival.

The most hurtful thing about having Ichthyosis is seeing the way others react to it. If clumsy, horrible words aren't falling out of their mouths, their expressions are saying exactly what they're thinking. And online, they dare their peers to google Ichthyosis for the shock factor and ridicule. And I apologise for the hurt these screenshots may cause.

 

I hate the sensationalism and exploitation surrounding this condition. And that is why I tell my story. And through curating the Ichthyosis Awareness Month blog project, I was able to educate not exploit.

The Ichthyosis Awareness Month blog project has meant that when you search for Ichthyosis on social media, you'll find these beautiful people.

You'll read a seven year old's matter of fact story - that he wishes someone would invent a suit to keep him cool. You'll see the beautiful sisters showcased by their proud Lioness grandmawmie. A baby, not yet 18 months old, will make you melt. Two friends show their strong bond. You'll see my Dad who, until the blog project, never talked to me about the difficult time he had as a young father to me. You'll read about a woman who loves to dance because it means she's close to another's body. You'll meet a couple who converted gawking into tolerance. You'll see a woman who at 30 years of age, came out about her Ichthyosis and tells me she is so happy for doing so! And you'll see a beautiful young lady who forgets about her Ichthyosis and rocks a ladybird costume.

You'll see what Ichthyosis means to them but also lives well lived. You'll see growth and strength and humour. You'll see wisdom and knowledge that surpasses their years. You'll see hope.

I handed over my blog to 34 courageous (mostly) strangers in May. The month was filled with beautiful stories and pictures. The content became such a niche topic - and sadly, as the screenshots above show, not a universally respected topic. But people came.

You came.

You read, commented and shared. You cried and smiled. You learned and empathised. You were moved and wanted more. You showed great interest and respect. I have had over 93,000 hits on my blog throughout May! So many people a little more educated about Ichthyosis, and so many people feeling a little less alone with their Ichthyosis journey.

Thank you.

A big thank you to the contributors. They were the stars of this project. The courage shown through telling their stories is enough to start a revolution. Each story moved me, some to tears, and I feel like I got to know the contributors personally through this project. And I LOVED how communities have formed - parents getting in touch across the seas. It's been amazing.

I'll be opening up my blog for guest posts about Ichthyosis beyond May. Contact me if you want to submit your story (or drop me a line via Facebook or Twitter). And of course, I'll be continuing to write about Ichthyosis here as I've done previously, so if you've found me through this project, I do hope you'll stick around.

I gave my first university lecture to Melbourne University medical students this past Monday. It was a genetics class, and the geneticist I see at the hospital was lecturing with me. I know very little about genetics. But I could tell the students that people sharing stories about their genetic illnesses and disabilities helps other people share their stories. And the Ichthyosis Awareness Month blog project is an embodiment of that.

Here are some of the amazing comments we received in May. Just wow.

 


Thank you.

I've not always been like this. I haven't always shown confidence, nor have I always told my story.

I was a wallflower, and not just at a party. I never felt good enough to look a boy in the eye.

I used to worry about skin flaking on my shoulders, or worse - someone else's shoulder!

And I'd never have dared to wear a strapless dress.

Growing up was the worst. It seems that most people who shared their stories here this month felt that too.

I recall the pain of waking up with a bloody face in the morning because I'd scratched it during the night. The salty bath water lapping at the abrasions on my feet made me scream.

The goats milk, grape juice and only chocolate once a month on a Saturday was probably for the best, but it was a special diet and I didn't want to be any more different.

I longed for thick cascading hair and a wind machine to blow it. My scalp was patchy and bloody, and an undercut only looked good on the roughest boy in my class back in 1994 - not on a meek and scrawny, red 15 year old girl.

I just wanted someone at school to be brave enough to touch me.

I didn't want to be called Skinner or Redlight, or Snarly when I lashed out at the bullies. I dreaded the day that someone else would say they didn't want to sit with me or be my friend anymore. I wanted to be permanently in hospital because people were nicer there, and they understood me. I didn't want to be me.

I can't remember the exact moment when I knew that everything was going to be ok. I think it was somewhere in early 2000 when I found myself surrounded by a group of friends at university. A group! I'd never had a group of friends before. I found myself going to their houses between class to watch daytime TV and talk about stuff people in their late teens and early 20s do, and to the pub on Wednesday nights. I wore low cut tops and cool sneakers and drank lolly water vodkas and boys kissed me. They kissed me! And had another group of friends at the department store I worked at - we went to different pubs on the weekends. I'd work and I'd study and I'd take trips away. I was leading a normal life! By the time I left for Melbourne I had over 50 friends come to my 21st birthday party! Things were ok. And now life is better than I could ever imagine.

I came to identify with having a chronic illness in my mid 20s. Identifying with having a chronic illness made me feel part of a community. I can be both normal and different, and that's ok. I realised that I was making a difference through just being me, being the person that I once didn't want to be. By embracing my identity and telling my story, it meant that I made the decision to make the best out of a difficult situation.

People ask me if I want a cure for my Ichthyosis. No, I don't. I don't want a medical cure, at least not while I am so active. I believe the side effects will bring down my quality of life. I don't want an appearance cure so that I will be kinder on myself. Because if it means that I'm lessening the redness or scaliness of my appearance, it means that I'm letting society's perceptions of visible difference win.

I haven't always told my story, but I'm so glad I did. It makes people less uncomfortable about an often confronting topic and appearance.

Thank you for being a part of the Ichthyosis Awareness Month blog project. I am so proud of it. And I've learnt as much as you.

(The final three photos in this post were taken by Ulyana for the True Beauty Project.)

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

36 comments:

  1. You know what I love about you Carly? Your honesty, your frankness, your passion. Don't ever change! Xxx

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    1. Thank you - that is lovely, and you're frank, honest and passionate too. Birds of a feather hey x

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  2. Gorgeous, Carly. You did a fantastic job with this project, and your confidence and grace radiates through everything you write. When I grow up, I want to be you.

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    1. Thank you so much :) wow that's a big compliment
      I don't quite feel grown up though!

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  3. A fantastic post, Carly. I have really enjoyed your series this month, and it has obviously struck a chord with many people - well done! The pictures of you are gorgeous.

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    1. Thank you so much - on both accounts. I loved being a part of Ulyana's project. And I loved having so many on board with mine.

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  4. What an amazing month! Well done Carly; you've worked so hard and done so well. And on a personal note, thank you for helping me learn all about Ichthyosis and its different forms, and how amazing to see Steph and her baby!

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  5. You are a wonderful advocate and a great writer. Growing up must have been bloody tough indeed. I mean teenage hood is so fraught anyway without an extra challenge particularly one that makes your appearance different to others. Really awesome stuff Carly. Congratulations.

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    1. I agree with myself. Very touching read second time round too x

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  6. It's been a great month. I have loved reading all the stories and have learnt so much. You look beautiful in the photos. Rachel xx

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  7. This was such an inspiring project for us your readers, Carly.

    On a more superficial note,your portrait photos in today's post are stunning.

    SSG xxx

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  8. Woo hoo Carly. Wonderful stuff. Congratulations on getting the word out far and wide. xo

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  9. Amazing and I rarely use the word inspiring but you are an inspiration xx

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  10. Carly, you are such a shining light. You have much to teach the world and the world, and your family, friends and your community here are blessed to have you. I admire you greatly for your kindness and strength and for using your life to do wonderful things. X

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  11. Gorgeous girl inside and out. I hope one day you realise how much you (&your writing) have changed the way we see others with disability. I have enjoyed reading, crying, laughing and being inspired by these courageous stories. Xxlisa

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  12. Great work Carly, I had no idea people were so cruel about the condition on social media...though I'm not surprised. How wonderful that people will be directed to these amazing stories when googling Ichthyosis in future x

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  13. I have followed your blog for quiet some time now and am continually blown away by you Carly.
    If more people were as giving as you our world would be a better place.
    Your strength and courage are an inspiration.
    How proud your parents must be of their incredible daughter who is always reaching out touching lives and truly making a difference.x

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  14. Having you as a friend has made me reflect upon my own mental health issues that no one can physically see knowing that when I say I am unwell they don't understand because I look fine. It also made me live my life differently because of the way you live yours. I know I have never told you that but I started living more instead of just existing when you came into my life. I think you are truly amazing and seeing and being a small part of your life has made me feel so lucky that you want to be my friend. You really are an inspiration and your attitude towards life is contagious, so thank you for being you and being my friend. Don't ever change and I hope we get to share more of our lives together over time. I have just read your blog and cried, laughed and felt proud of you and proud to call you my friend. Big love xxx

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  15. There is only one word - beautiful!

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  16. Great job. Beautiful...truly, eye-openingly, compassionately, honestly and humanly beautiful. Thank you. X

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  17. Thanks so much - your support as been amazing x

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  18. Carly you are amazing!!! Your words touched my heart, you have so much to give!!! Lovely.xxx

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  19. Carly you are amazing!!! Your words touch my heart. You have so much to give!!! Lovely.xxx

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  20. CARLY, well done, and I hope you will allow me and believe me when I say, I love you in the white dress. Not sure if we can meet, as I have come down with Bronchitis. Maybe a blessing hey!!! Enjoy the Accolades!!! xx Pauline

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  21. Hi Carly, I hope you will believe me and allow me to compliment you on how stunning you look in your white dress. I just live it. I don't think I will be able to meet you next week as I have come down with Bronchitis. Enjoy the Accolades you deserve it. Pauline xxx

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  22. Thank you for entering your post in the DP Blog Carnival!

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  23. Carly, I just discovered your blog via digital parents carnival and am thrilled I did! Thankyou for sharing your story, your life your pics you are amazing and I have learnt so much. bron

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  24. What a beautiful post. Thank you for writing it, and for sharing it! Clicking back through to read the others now. x

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  25. What a great post and a fantastic cause! Congrats to you for raising awareness by sharing your story. Your photographs are stunning. That Ulyana knows exactly what she's doing! DPBC visitor X

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  26. Hi Carly. I read your piece via The Lounge link-up. I have a tendency to make rather wry comments on people's blogs but, in your case, I was so moved by what I read that I wouldn't dare! Thanks for posting and linking.

    I also googled "harlequin ichthyosis" images to spite those guys on Twitter.

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  27. I loved how you said you realised you were making a difference by just being you. So true. You really are. Congratulations. xo

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  28. Carly, I read this when you first posted it, as well as many of the other stories. My feelings then and now are the same. I am completely in awe of your courage. To face down the ignorant and sometimes ugly attitudes of some people, while try to educate the rest of us about icthyosis, is both brave and generous. You must be very proud of what you've achieved.

    Thank you for linking up and adding your story. I feel very honoured that you did x

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  29. If it were me (and this is only me, I expect no one else to feel this way), I'd want a cure, but not because of my appearance, or maybe not only. No, I'd want it just so I wouldn't have to worry about drying out anymore, so I could cool off without so much effort. That would be the big deal for me. Feeling better.

    As far as I know, my worst physical problem is being overweight. I'd love it to go away. Not to look better--I have always looked a little funny, even before I got fat. But because it would feel so much better to not have to stuff bits into my clothes at funny angles.

    There are practical reasons for wanting this stuff. Except it's not so practical after all when you know none of it's possible. But making the best of it IS possible, and you have done an awesome job of that.

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  30. Thank you for being you! I've learned so much from you here Carly! Thank you Xx

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