"What happened?", or "are you sunburnt?" these are some of the questions Carly Findlay is asked by strangers before they even greet her with hello.
Therefore, it is quite fitting that the title of her recently published memoir is titled, Say Hello.
Carly, who was born with a rare and painful skin condition called Ichthyosis, will visit the Border this evening to present an author talk hosted by Wodonga Library.
The event will take place at The Cube Wodonga from 6pm to 8pm. For tickets click here.
Photograph: Camille Condon
What Carly faces every day, and what she has to live with, will have you cheering for her and her courage and irrepressible spirit.
This author talk will be AUSLAN interpreted.
Carly is an award-winning writer, speaker and appearance activist.
Writing a book was the next logical step and it's also a manifesto, featuring advice and anecdotes about her life.
"It's for two audiences: people with Ichthyosis, facial differences, chronic illness and disability, as well as non-disabled people," she said.
Growing up, Carly didn't know anyone with Ichthyosis.
"Now, thanks to the internet, we are connected a lot more. There also wasn’t a book by a person with Ichthyosis – only medical textbooks and a parent memoir. I needed to write the book Little Carly needed," she said.
"Writing a book was really hard – the time commitment, sheer amount of work and also delving into difficult times and experiences that I had tried to forget. But I wasn’t anticipating the love for the book – the excitement around it, the positive reviews and interest from people who want to see me talk is incredible. I am so thankful."
Asked if she could talk to Little Carly today, what advice would she give to her?
"I would tell her that everything is going to be ok. Ichthyosis will never go away, but she will have a great life with a good job, wonderful friends, a husband, the opportunity to travel, and a fabulous wardrobe," she said.
"There’s a letter to Little Carly in the book."
The book covers some really personal and confronting moments in her life, but Carly explained she needed to re-visit them.
"It was hard to dig up things that I haven’t thought of in a while – things that were difficult or shameful. I wanted to write about discrimination without being seen as a victim, and that’s hard," she said.
"I also wanted to show that I am not perfect, that I could have done things differently and I make mistakes too.
"It was good to have the space to write about the things that are often so hard to write on social media – for fear of devil’s advocates and what-about-ists.
"Often when I take to social media to write about discrimination that happens to me, it’s met with more discrimination – in the form of justifying that behaviour, people disbelieving me and others, and diminishing our experience.
"Writing about the difficult times in the book allowed space for me to reflect, and also provide more distance between me and the audience.
"I was lucky to have had years of practice writing, and also building and managing an audience on social media to prepare me a little for the release of the book."
Carly offers some advice to those with Ichthyosis in the book.
"I hope that through my work they will feel less alone, gain some confidence if they were lacking it, and feel they can be assertive when they’re asked intrusive questions," she said.
"I also hope it helps them tell their story in some way – be it to the media, opening up to a new partner or even admitting to and accepting for themselves that their Ichthyosis, is in fact, here to stay.
"And finally, I hope that they can enjoy finding others with Ichthyosis – sharing experiences and laughs, and supporting each other through the hard times.
"It has been nice to receive messages from people with Ichthyosis and facial differences and other severe skin conditions and disability telling me my work has helped them."