Editor’s Note: Carly Findlay OAM is a writer, speaker and appearance activist. She’s also the author of “Say Hello,” a memoir that recounts her experience of living with the rare skin condition ichthyosis. All opinions expressed in this article belong to the author.

CNN  — 

Since I was a young child, the media has told me that my flaky, red skin is repulsive.

Beauty was confined to the unblemished skin of models in magazines and on television, and advertisements promoted anti-dandruff products and solutions to reduce redness. I still see ads today that sell creams to eliminate the embarrassment of dry, scaly skin.

I was born with a rare, severe, incurable skin condition called ichthyosis – it causes scaly red skin, itching, pain, and raises social challenges.

Growing up in Australia, Carly Findlay didn't see anyone on TV with the same skin condition until she was in her late teens.

I never saw a person with ichthyosis in the media until I was around 17. That person was a patient undergoing surgery on a sensationalist tabloid-style documentary TV show and, as the camera zoomed in on their scales, the host – who presumably didn’t have ichthyosis – presented their skin as a tragic affliction. I don’t believe ichthyosis is a tragedy.

The stories that followed were no better. Ichthyosis was covered sensationally and disrespectfully, with dehumanizing headlines like “snakeskin woman” and “plastic baby.” Videos and photos were shared of children having scales removed in the bath, and of parents talking about how much they had hoped for a “normal” child.

After lodging countless complaints to the media about how they reported on ichthyosis, I decided that I didn’t want to read another article about ichthyosis unless I had written it myself.

So, I wrote myself into the media. I started writing a blog, pitching articles and doing interviews on community TV, which led to speaking events, appearances on mainstream television and a book – a memoir called “Say Hello.” I made a consistent effort to be visible in mainstream media, on social media and in everyday life, representing ichthyosis as a condition, not a curse. I am passionate about showing a full life led with ichthyosis, not a life to be pitied or ridiculed.

In the last year, I’ve taken to posting photos of my outfits on social media with the caption, “I wore this today and felt f**cking fabulous.”

I do it because it’s not what many people expect of me. They expect that I can’t possibly feel good about my appearance – and definitely not fabulous – because disabled people, people with facial differences and skin conditions are meant to hate how we look. We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole.

I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I’m ugly or don’t expect me to have body confidence.

I am careful to only post photos of my real face – unfiltered. I don’t reduce the redness, nor edit the skin flakes from my scalp or clothing. I do it because I don’t want to hide who I am, and I do it so I can be visible – because I believe visibility creates possibility.

I also add image descriptions to my social media posts, so that people who are blind and have sensory impairments can know what the photos show. It’s an easy and free way of making my social media posts accessible to disabled people – and anyone can do it.

Until about 10 years ago, photo retouching was only done to models and celebrities in magazines. Now, with the help of an app, or even some phone cameras, anyone can sculpt their face or remove a blemish in an instant.

It worries me that we have access to digital retouching at our fingertips, and that so many people don’t show their true faces anymore.

It takes a lot of courage for those of us with facial differences and skin conditions to show our real faces on social media, when those with beauty privilege are altering theirs. It says a lot about the impossible and homogenized beauty standard that we’re told we must aspire to.

Recently, I saw a friend’s Instagram photo and did a double take. Her face had an enzyme peel mask on it, which made her skin look and peel like mine does overnight. The skin around her mouth and chin was similar to mine when I wake up – tight and cracked.

My morning face is something I’d only let my parents see, and now my husband of course. I carried so much shame about it for years, that not even I wanted to look in the mirror.

I commented that this looks a little like ichthyosis, and you pay a lot of money for these peels, but my face peels daily. While my comment was good humored, implying that my ever-youthful looks come at zero cost (it’s true, I look like I haven’t aged since high school, and I feel quite smug about this!), I thought about that photo for a long time.

I thought it was interesting that women strive for beautiful, youthful skin through chemical peels and other cosmetic treatments, and yet when it happens naturally for people like me, we are ostracized.

Findlay has written a book about her experiences, titled "Say Hello."

I admired my friend’s confidence to be so public with this photo and realized that I do not have any photos of my morning face because I’m too afraid of being trolled on Reddit (again). Though for a minute, I wondered if my friend had made it safer for me to photograph and share this morning face. Maybe one day I will share that morning face with the world.

I am so grateful that social media gives disabled people a platform to connect with each other, and to be seen. I urge everyone to follow diverse people, especially those with a different life experience to theirs. Enough with the Instabland.

Considering social media is such a visual medium, often rife with trolling, the response I get to my photos is overwhelmingly positive.

People compliment me on my colorful fashion sense, which is lovely.

But what means most to me are the comments I receive from people with facial differences and skin conditions, who feel less alone, or more confident in their own skin, because I’ve posted a photo of myself.

Visibility is possibility – and I’m helping people become comfortable and confident in their own skin.