Ichthyosis Awareness Month - my story: "I've built a strong sense of resilience - both through having Ichthyosis and as an online writer."

It’s the last day in May, and that means Ichthyosis Awareness Month comes to an end. 47 blog posts were published in May - and that’s been a great feat amongst full time work, organising the meet, participating in the Emerging Writers Festival, travel, university lecturing, freelance writing and living life (and there have been some tough things to deal with in May). I don’t do things by halves! I’m tired.

While I have not been writing for my own blog this month, I’ve been collating, editing, scheduling and promoting all of these posts (with a little editing help from three people). It’s been a huge job! You can read all of the stories here - and if you’ve got time, 2013 and 2014. Who knows what 2016 will bring?!

I’ve also shared my story on some other blogs this month - readers of The Chronic Ills of Rach, Champagne Cartel and Hair Romance are now more aware of Ichthyosis.

The comments received and connections made through the month have been wonderful. Again, those who’ve written posts felt very empowered. For some, it was their first time telling their stories and this has given them confidence to continue. I am blown away by the reach of this blog project - some posts have been shared on Facebook more than 600 times!

From Mary:

"Thanks all for your comments. This post is part of an awareness for Icthyosis and it's many facets. I have a mild form, caused by a recessive gene inherited from both parents. Who knew!! However some folks have really intense skin care routines needed to stay out of hospital and/or to avoid serious complications. I follow several sites on fb and I am in awe of the courage and tenacity that some people have when facing the daily rituals that help keep them healthy. Again, thanks for reading."

Ashlee, whose son Thomas died from an infection related to Ichthyosis last year, told me May has been her favourite month because she has read so many stories from others, and because Thomas’ life was celebrated:

"I can't thank you enough for sharing our story. You are one of the most selfless, caring and loving people I know. You have such a huge heart for others and you will never know how much you mean to me. The tears just won't stop right now. That was my first time to read our story again since I sent it to you, and this week is already SO hard. We miss Thomas more than we could ever describe. We're so thankful for people like you who remember and celebrate our sweet angel. Thank you! I love you Carly."

Becky wrote to me after her story was published:

"THANK YOU THANK YOU THANK YOU for doing this. It is such a wonderful thing that you do."

Nicole, Daniel’s adoptive mum, said:

"Every day I read these and think, "That's my favorite!" And then tomorrow comes, and I get a new favorite! Thank you so much for coordinating this project."

Anita, whose child has Ichthyosis, wrote:

"We have never met Carly but I do enjoy reading and learning from your blogs yiu are doing such a fabulous job keep it up."

And people who don’t have Ichthyosis have enjoyed the posts - becoming aware of the types and severities of the condition. From Rebecca:

"Thanks for taking the time to source and share these posts Carly. I'm really enjoying the insight, the info and the personal journeys of all the people you've featured."

A friend from my hometown wrote this of Aurora’s story:

"In Australia we talk about discrimination, but we only see it a higher level, sport, politics race and religion, and yet our schools allow bullying to happen at a rate that has not changed sinc my kids were at school some 30 years ago, and in fact since I was at school some 50 years ago it is getting worse. Aurora is a beautiful young woman with a most beautiful smile, and to even consider that those of us can speak ill of someone who from the start was walking up a hill, and yet has the courage to face life with only love and empathy, where has it all gone wrong. There needs to be more stories like Aurora than Essendon."

Thank you to everyone who’s written their story, read the stories and shared them. Some people were so dedicated they shared every single post. It means so much to me and to the contributors.

Photo credit - Amy Cater

I’ve been thinking of life as a blogger and life with a visibly different appearance. And if you are a blogger with a visible difference, the exposure to comments (good and bad) increases significantly. People think they know you, that you're fair game for criticism. Fortunately when I put my blogger hat on, the supportive comments outweigh the negativity and criticism, and people genuinely see me as a whole person. The comments and stares that come my way because of my skin and blogging can be very tiring. Most times, these people don’t know me. And when it’s from within the community, it’s lateral violence.

The Australian Ichthyosis Meet was one of the best things I've done. It was a proud moment when donors got on board to support it, when the first guests arrived, when people smiled and when friendships were formed. I can't believe it happened! Despite the overwhelming positivity, it came with backlash.

While I don’t want to dwell, the criticism I received for the Australian Ichthyosis Meet cut deep. I was accused of exclusion, told I was bragging about my organisation of the event, and that I use my skin to get attention - among other things. It came from a number of people in the Ichthyosis community - their words were bitter, and it says more about them than me. We all have a choice in this world, and my choices are to be happy, to be driven, to make a difference, and not to cut others down for their success. People say we have to take the good with the bad. "You put yourself out there" is often provided as justification for me copping criticism. I do put myself out there, but it doesn’t mean it’s deserved.

I've built a strong sense of resilience - both through having Ichthyosis and as an online writer. I make like Taylor and shake it off, but I won’t lie, it can still hurt. I remind myself of this by Brene Brown:

"If you're not in the arena getting your butt kicked too, I'm not interested in your feedback.”

They're not in the arena I play in. I am not interested in their feedback, and I won’t tolerate their behaviour. The behaviour I’ve been on the receiving end of this month has ensured these people will never be involved in my life or events I organise. I’ve defended myself, my work and my reputation.

The bold contrast of admiration and criticism or discrimination is often present when you have a visible difference. I saw this On Thursday, when Mui (who has Harlequin Ichthyosis) posted a Facebook status about discrimination she faced in Hong Kong. She said a bus driver wanted her off the bus because her face made him want to vomit. That level of discrimination makes me so sad and angry. Mui (and so many others with Ichthyosis) endure these events regularly. Mui’s parents have since made a complaint to the bus service (that driver has often been sacked for similar behaviour).

And earlier that day, her story was being shared on popular women’s opinion site Hello Giggles - she’s being lauded as kind and inspirational. What a contrast. What a star. I hope Mui continues to receive praise and compliments than words of disgust. She has received so much support these past few days.

Mui’s parents said:

"Why write a book? Because of recurring ignorance like last Thursday on the minibus.”.

They told me that they’ve written a book to address the discrimination and cyberbulllying Mui regularly faces. You can read their story on their blog.

And their reason is why I blog too. I want to highlight these incidents, that happen to me and to others, as well as share the celebratory ones. I want to show you there’s a dark side to writing a blog and organising an event that helped so many others. Fortunately that dark side doesn’t present itself too often, and I will continue to be proud, build communities, provide education and make friends. And I know I won’t win everyone over - as Pip writes, I don’t need to. I have amazing people around me - near and far.

In my introduction post for the month, I wrote about creating the thing I wanted to exist. I created the first Australian Ichthyosis Meet on my own, with the help of some others. I set my mind to it and I did it. Maria said:

"I am proud of you Carly Findlay. You have managed to not only organise a successful gathering of beautiful people but the way in which you did this ensured that we walked away with friends forever. Well done Carly."

Eleanor said "It was life changing! xx" and Rebekah said "We all made new best friends for life xxooxx"

And that's what I stand for. To bring people together. To make them feel valued. I can use this blog to create positive change. And I have. I'm proud and won't be quiet about that.

If you find others pulling you down because of the way you look, or for being happy with yourself, or for being proud, or for defending yourself or for being assertive following a rude comment, ignore it. Hold your head up and continue being true to yourself. Be the better person. Ichthyosis is such a rare condition and so many people don’t experience the comments, stares and discrimination first hand. Those critics are often not in your arena. And if they are, you don’t need them.

Thank you for being a part of Ichthyosis Awareness Month 2015. It’s you I’ll focus my energy on, it’s you I’ll remember.

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.
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