31 May 2014

Ichthyosis Awareness Month: my story. I am not a sufferer.

May. It was a busy month. Five countries, five plane trips, two longish train trips, lots of freelance writing, three writing classes taught, a bout of very sore skin, a lurgy that could only be cured with doses of brandy and dry ginger ale and 41 stories written by people experiencing Ichthyosis and then edited and published on this blog.

Forty one! I was getting messages and emails throughout the month from people asking me how they can share their story in the Ichthyosis Awareness Month Blog Project too. I published every story I received, editing only for spelling, paragraphing and hyperlinks. I wanted to leave all stories uncompromised. I wanted to give people a voice, in a trusted and supported space. And I think I did that successfully. While it's been a huge amount of work on my end, I've always so proud to share each post - to showcase the beauty and journey of each contributor.

These 41 people were courageous. They are so courageous, even when in the past they haven't been confident to tell people close to them about their skin. And now they've told the whole world. The blog's had almost 80,000 hits in May. The contributors been courageous enough to look the world in eye when they have encountered people so uncomfortable with their appearance they haven't been able to look the contributors in the eye. (That's my quote up there. I said it for a little TV thing I did.)

I love how the Ichthyosis Awareness Month Blog Project has brought people together. The contributors became friends with each other and readers really interacted with them. There was so much empathy shown. But we also learnt that everyone's Ichthyosis is different and we have different treatments and appearances.

Kelly noted "I love learning about Ichthyosis thanks to Ichthyosis Awareness Month (IAM). So many different varieties of Ichthyosis yet us with it are all the same having to do our baths, creams and more! I have Ichthyosis but knew a little before this month due to many docs knowing nothing about it so I'm glad IAM exists."

The support that was generated from readers empowered the contributors and also encouraged others to tell their stories - in the form of blog and Facebook comments. We've received so many wonderful comments and genuine questions - and not one negative comment. It's been wonderful seeing discussion generated about Ichthyosis, what it's like to look different and to treat people who look different. I've saved many of the wonderful comments to reflect on and share.

Sam, who was very reserved to tell her story, wrote:

"I wrestled for weeks to get my story to Carly for her project for Ichthyosis Awareness Month, as I come from a generation where networking didn't exist & even now I feel as though some may frown upon my having shared my past as openly but Carly Findlay & her awareness campaign work & skills in presenting our stories is fantastic and I thank her for encouraging to me do the article despite my reservations & it coinciding with a roller coaster week of family events. Thanks for reading & commenting."

Robyn, who watched my video, told me:

"I just watched your video with my 3 year old daughter who has ARCI, and she repeatedly kissed your face and said she loves you, then turned to me and said "mama, I wish you were like that". Brings tears to my eyes, even though her type is different than yours it is so clear to me how connected she feels to you, without even meeting you. You and her are the norm in her eyes, and I'm the one out of place : )"

I reassured here she was a great mum and that it's a huge learning curve for all parents.

Terry, who wrote her story - and after 56 years, has found others with Ichthyosis after feel alone with this condition, messaged me after reading Darin's story:

"I just had to tell you Carly, as I read Darin's story this morning, something came to me that I not realized was there! I have always avoided people touching me at all cost, but never understood why I felt this way. I have always been sensitive to people questioning me about my skin, but could not figure out why I don' t like people touching me. After reading this story, I finally realized why I have been this way my whole life. Sharing these stories has changed my life!

We are so blessed to have such wonderful men in our lives! I really do think that being "different" has made us more sensitive, caring people! I have gone 56 years without having anyone to talk to about this except my own family, but meeting you has changed all of that, and I will be forever grateful!"

Bobbi who has Ichthyosis but hasn't told her story yet said:

"I would like to thank all of my friends and family who is taking the time to read the stories. It means more than you can ever understand. Carly I want to thank you for doing this blog And for having the strength to bring awareness And education for The people with ichthyosis that don't have the courage to speak up! I would also like to thank the people that have told their stories!"

Cheryl, one of our committed readers, wrote:

"You've brought people all over the world together. People who otherwise wouldn't have met. You've made a little community out of people with ichthyosis, and the people who love them. (That's me, if you hadn't guessed!) So proud to be part of such a lovely network of caring people."

Alex, a friend who is a dedicated reader, wrote:

"I'm astonished by the recurrent theme of doctors telling these parents that their children's lives will be so awful and unfulfilling. I think this project for awareness month is doing exactly what you intended: giving people the chance to see beautiful, interesting people who have icthyosis as a small part of their life not necessarily a defining feature."

Joanne, who I went to school with, wrote to me:

"Brenna and Connor melt my heart. I love Courtney's message here. Its what my children have been made aware of. Yes, someone with a visible difference may arouse curiosity in my child. Yes, my child knows that they can ask me about it later on, but at that moment they know that person is just enjoying their day and has no responsibility to my child to educate them.

Recently we were served for about half an hour in a shoe shop by a man who had half of his arm amputated. My son didn't bat an eyelid. My daughter noticed his arm and then just got on with the shoe shopping. Just as we were about to leave, the man bought up his arm. I'm wondering if he was curious as to why my children didn't say anything about it. Olivers response to the man bringing it up was along the lines of- yes you do. Some people have no legs, some people are blind. They are just getting on with their day. Its not my business. But I like to say hello to everyone."

Carly-Jae said:

"Oh, the irony. There's a women's health magazine that has Michelle Bridges on its cover, sans makeup. The media are calling her 'brave', and I just shake my head with what we define as brave or 'heroic'. Samantha constitutes brave for me. Samantha, what an inspiring woman you are. YOU are brave for being able to live your life so authentically, when you would have had (and still have) a rough time of things. You rock xo"

Naomi, who has a disability, emailed me:

"Just read your latest blog post, & I'm a blubbering mess of emotions. I want to give that family a big hug. Reading Aurora's accounted had me thinking back to my childhood & how I struggled with exclusion & bullies. This post touched me in a huge way. I forwarded this post to my Mum, who also could empathise with the childrens mother.

Carly, you are a great writer, I have thoroughly enjoyed reading all the posts of the Ichthyosis Awareness Month."

Abby, who has Ichthyosis, wrote:

"Hi! I just wanted to say thank you so much for putting in so much time to do ichthyosis awareness month on your blog, especially while you were on vacation. I look forward to reading all the posts and i have even met some new people! Like Shawnee, the younger one. I friended her after reading her story and one day after reading her status I messaged her and we get along really well! Thank you so much for doing so much for ichthyosis! I really look up to you and I hope one day to be able to meet you. You are wonderful beyond words can say!"

And this from Vanessa.

"Every time I read someone else's story I feel pain and regret that I was ever mean to anyone about their appearance for whatever reason."

Those words are why I do this project, they're why I tell my own story and others'. I am so incredibly proud.


I've learnt a lot about Ichthyosis this year - both about the physical aspects and the emotional. Many of the stories showed great struggles - some I've never experienced or even imagined I'd experience. There's been recollection of physical bullying, of parents being told they're harming their children, of exclusion and pain. But all the stories - even the sad ones - show incredible hope and resilience.

I genuinely want to thank everyone who has been so supportive of the IAM Blog Project. To all 41 contributors and their families - thank you. There wouldn't be a blog project without you. You've been wonderful - your stories are amazing and you made this a success. There have been people who shared each post every day - a special mention to Kelly and Nelly and Pery and Kitty and Laurie and Joanne! The pictures on Instagram have been liked and commented on multiple times. There's been amazing regular commenters on Facebook and on the blog. And when I was overseas in a different timezone, I put a call out for help because I could not cope with doing the social media promotion on Australian time (10.00 pm UK time) - especially while I was unwell. And people came to my rescue - a special shout out goes to Margaret (whose granddaughter has Ichthyosis) who did so much social media work promoting the posts in relevant Facebook groups. I'd also like to thank Adam for all of his encouragement, promotion and belief in me. He did the most wonderful thing the other day - made a selfie for the FIRST I Am campaign. My heart melted.

I want to indulge a little in sharing my own story now. I've thought about the message I put out in the first post of this series - the words from Darren Hayes.

"The thing that make you unique make you a target...

The thing that makes you unique sets you apart."

It's often this uniqueness that people don't understand that makes them think our lives are less than ideal. They push their experiences and expectations onto us.

I get told I suffer. Sure suffer is a word that could be replaced by experience or live with or hurt or be miserable or be in pain or display symptoms of. But for me, not suffering is a choice. I said 'I am not a sufferer' on my I Am selfie. And I believe it. I am not a sufferer of Ichthyosis.

I get told by strangers on tram that they're doing pretty well compared to me. I am described by doctors who don't know me well that I suffer from this skin condition. I correct them, saying I'm living with it.

I get told by people with Ichthyosis that I suffer.

Am I told by others that I suffer because they do?

I don't suffer.

There's is often debilitating pain, the hot pounding of my legs when they're particularly sore, and the race to put cream and them and elevate them quickly after a shower. This is not suffering. It will be over soon, I tell myself.

I understand it's my appearance that confronts others. Apparently I look like I've been badly burnt by fire or fell asleep in the sun. I get that it looks sore. But to assume I'm suffering is to assume that I am not happy in life. The assumption of suffering is an insult when I don't feel like I am. It's a lesser life assumed.

I work a full time job and freelance on the side. I am in a loving relationship. I have a good sense of self and positive body image. I have wonderful family and friends. I go out and see bands and eat and travel the world alone. I have huge goals and want to keep doing more to promote appearance diversity. I've met wonderful people along the way. I see opportunity in the hard times.

This is not suffering.

Sometimes my positivity makes people as uncomfortable as my appearance. They're not sure why or how I can be happy. How can I be happy when I look like this? Like something they want an operation for. Like something they tell me they'd be too scared to leave the house over. But you know what? Most days I'm laughing out loud at the thought of a wonderful life now and in the future. I'm not resentful of difficulties in my past. I'd rather rise above that and not suffer. I believe it's a choice.

There are two verses in the recently deceased Maya Angelou's poem Still I Rise that I identify with.

Aren't those words just amazing? "I laugh like I got gold mines diggin' in my own back yard." I think about the way we rise up against the cruel words and stares directed at us. It could be easy to be a victim, but it is so much more satisfying to rise, to live like we were never expected to. Still, I rise. Despite. Despite the pain, the stares, the ignorant and cruel words.

I don't suffer.

I live.

I celebrate life.

And so does everyone who has had the courage to share their story in the Ichthyosis Awareness Month Blog Project.

(For those who still want to submit a story for my blog - on Ichthyosis or appearance diversity - you can still do it but I won't be publishing it in May because it's all booked out. Happy to publish your stories throughout the year. Email me through the contact form.)

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.



  1. It's funny. I see you as the opposite of suffering. Your condition seems to have ignited something in you to go out and do more with your life; perhaps you would have anyway, had you not been born with NS, maybe that is just you. Regardless, you are inspiring.
    I am around the same age as you and have lived half a life compared to you. Having additional challenges tends to either help people rise to their full potential or shrink away. I have so enjoyed the posts this last month of all 41 risers. Well done!

  2. Karen L Sawyer I have to totally agree with you. Like you I'm NOT suffering from it. I'm living with it, living life the same as someone who was born a blond, redhead, brunette etc is living with their hair color and yes that's how casual I view it.

    I mean, how can you miss something you've never had? For me, living with EHK is no different than someone who's living with acne, only I've had it all my life so it's no sweat off my back for the most part.

  3. Thank you for sharing all your courage with us, I'm crying for the poem at the end and your magnificent explanation about the difference between "suffering" and "living with" it. Thanks to your post I'm decided to tell my story. Love and God bless you all.


Thank you for reading my blog. I love receiving comments :)
I really appreciate the time you've taken to write to me, and to share something about yourself.


Related Posts with Thumbnails