“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 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.
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.
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.)
For Ichthyosis and appearance diversity resources, click here.