31 May 2015

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.
Be social: follow me on Facebook, Twitter and Instagram.


  1. You are an inspiration Carly. Don't let others get you down. Big kisses xxx

  2. You are amazing lady - keep fighting the good fight - you are doing so much good.

  3. Every time I see your fabulous logo it makes me smile! It's so gorgeous! Keep shining your light, Carly. The work you are doing is so important. As one of your on-line friends, I have learnt so much from you. Your impact is MASSIVE. xxxx

  4. Til I found your blog Carly I had never heard of Ichthyosis. This month has seen a stellar effort of all the gathering of all the writings of people sharing their stories.. Amazing and inspiring.
    In my mind I picture it as little ripples spreading and weaving and creating community all across the world. How beautiful. And yeah those ripples don't come without some little dips and ebbs.. But jump on the peak of the next wave of awesomeness and sail on by xx

  5. C not only stands for Carly, but it also stands for Courageous, Caring, Commitment. You may be thousands of miles away Carly, but that is what I see in you, all the way to Boston Mass USA! Keep up the excellent work you do, we appreciate it!

  6. You don't really need any more validation from me, you know I think you're a Mighty Girl [Woman]. But as I've read the month's worth of blogs, it occurs to me that your life has followed an ancient principle from the Talmud (Jewish Law). You have touched so many lives, but if you had reached only one, it would have been as if you had touched the whole world: Whoever destroys a soul, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world. — Mishnah Sanhedrin 4:9; Babylonian Talmud, Tractate Sanhedrin 37a. http://en.wikiquote.org/wiki/Talmud

  7. 'm astounded by the criticism you received. What the hell is wrong with being proud of organising the Meet? So you should be proud. And exclusion? It was the first bloody time the Meet had been arranged, how could you possibly involve everyone when you didn't know how it will turn out? It certainly does seem more about others than it does about you. I think it is your unabashed honesty that people don't like, well some people anyway because for me it is your unabashed honesty that I freaking love which makes me more honest with myself and others as well. I actually feel sad for those who criticise you because obviously they have some kind of pain that runs very deep, why else criticise someone who is making such a positive change for people with ichthyosis? Thank God it has made you stronger and not changed you.

  8. I find that there can be such a 'hierarchy' when it comes to chronic illness, and it's something I've experienced first hand. It's unfortunate, but I realised long ago that these people are jealous and small minded, so I'm not shocked that you bore the brunt of such bitter and hurtful comments. Like you, I've learned to 'shake it off' and know that I've created something special when other people have been too lazy to create something of their own. So proud of you! XO

  9. May has been a wonderful month! Go you Carly! You are such a wonderful role model, what you have done for our Community is beyond amazing! We love you for that. Speak loud, speak proud - you are a bright shining star!!! xxx

  10. Hey Carly.
    It's Clare (from the brunch) here.
    Thanks again for sharing all the stories. I promoted them on my own blog (myzania3350) through May using the title, bolded words and the heading picture.
    I'm really glad you've done this project. Its so good to learn about the stuff you say. I'm so glad that the meet went well and that this community you've created is thriving.
    You're a role model, definitely. I hope I'm as comfortable and confident as you are in 15 years....

  11. Thank you Carly for your blog, we may be on the other side of the world but everyones contribution is an inspiration.
    On the subject of negative people , there is always some miserable bastard who focuses on successful , life lovers like yourself to vent their pathetic existence , misery, meaness and at worst hate.
    I wish you the VERY VERY best.

  12. Congratulations on yet another great blog project. May has been awesome for my family and the rest of the Ichthyosis community. You do great work Carly, keep it up and looking forward to 2016!!! Xx

  13. You're amazing Carly! May has been a fabulous month for you and I've enjoyed reading the different stories and being touched by the raw honesty.

  14. I've learned a lot about Ichthyosis and the various forms. I didn't know how severe it could be for some people. Some posts have made me think more about disability, something I try not to do as I fit more into the 'mental illness' category and don't feel like I fit into the disability community.

    Your work has also been inspiring, making me think that I may actually be able to make a difference at some point in my life. smile emoticon

  15. Well done Carly on all your stories presented for Ichthyosis Awareness Month! I've read, been moved & felt further empowered living with my own Ichthyosis via others own life stories. The hierarchy mentioned in an above comment within illnesses & the medical profession down to the public & even within different people's lives can be such a challenge. I still live a world at times whereby only my nearest & closest family & friends get or approve of my even mentioning my skin condition, let alone networking, commenting or liking something even on Facebook can feel like dissaproval by some. The attitudes of "put up & shut up" exists to today via certain people & aspects of society. Your work challenges this daily & has inspired me to relax bit by bit even though I still feel the pressures at times. I also know my life could be so much worse or not here at all via my family experience with Ichthyosis, others experiences & the global differences of medical, societal & cultural care & views of those with Ichthyosis.
    I still value having had your encouragement to write my own story last year because although I have expressed elements of my life to people close to me, medical professionals, or via my Art works (which has been quite upfront at points); I had never had the encouragement or confidence to share my own Ichthyosis quite so openly before. In the year since I have felt less suppressed even though I'm well aware there are those who disapprove of me doing so & I have to tread a fine line on social media at times because it can be stressful to feel that dissaproval even from people within my world, which casts long shadows around me to be as upfront as I ought be able to be.
    This said many steps have been made & I have Art to be able to express & challenge perceptions.
    However without the awareness work that you do Carly the world would be a much more repressed one for Ichthyosis, appearance diversity & many individuals around the world like me.
    So yet again it's been a wonderful May for Ichthyosis Awareness & I am truly humbled & inspired by all the stories I've read & your ongoing projects & blog work.
    Good luck with all you continue to do! :-)
    Sam Morris.

  16. You make me want to be better. Keep doing what you do. I can't wait to see what the future holds for you my dear!

  17. I hope you enjoy a well deserved rest superwoman!!! I know words can be hurtful, but know that you are making a difference to many. Keep Calm and Carry on as they say. X

  18. Thank you Carly for allowing me to be a part of your IAM project. You care so much about others. Like I've told you, try not to worry about those negative people and focus on ALL the good that has come from this month. You're awesome!


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