"Often the first thing people say to me is a comment or question about my appearance. Even before they say hello," she writes.

What follows is an insight into what it's like to experience the world as someone with a rare, visible disability.

Ms Findlay was born with ichthyosis - a severe skin condition typified by scaly, red skin.

RELATED: The best mistake I've made was no longer being 'nice' about my disability

For years, she has written and spoken on issues such as disability and appearance diversity.

Ms Findlay has shared her story through mainstream media, speaking engagements and events, and her blog and social media.

But this is the first time she has written a book.

"I think it was one of the hardest things I've ever done," she told the Bendigo Advertiser.

She went into it thinking writing a book would be like writing a series of blog posts and putting it all together.

"It definitely wasn't like that," Ms Findlay said. 

There was a narrative that needed to flow through the book. 

"It was a really long process, and writing with an editor at such close proximity was really different," Ms Findlay said. 

"One of the great things was the book gave me a space to write things I had previously been too scared of."

'Say Hello' provides a glimpse into many aspects of Ms Findlay's life, from her daily treatment routine to difficulties she has encountered while travelling, to some of the despicable things people have felt entitled to say to and about her, based on her disability.

RELATED: 'I expected better' - Carly Findlay speak out about offensive questioning

Whereas she had to contend with a 'high element of trolls' when writing online, Ms Findlay said the book writing process gave her a real space to explore her ideas.

'Say Hello' has also given her a platform to share her experiences with a broader audience. 

Ms Findlay said she had given more than 50 interviews promoting the book in the past two months. 

She will next week discuss her book with attendees at an event as part of the Castlemaine Fringe Festival.

Books at the Brewery - Meet Carly Findlay is on March 26 from 6.30pm - 8.30pm at The Taproom.

It is a ticketed event.

'Incredible' was the word Ms Findlay used to describe the response  to 'Say Hello'.

"I was not expecting the love," she said. 

"I had an email from someone who is quite a prominent person in the disability community and they said the book could have been written about their condition."

RELATED: I am tired of people being scared of my face, which is why I'm putting it on TV

Sharing what it was like to grow up with ichthyosis and know it was going to be ok was part of what motivated Ms Findlay to write 'Say Hello'.

"There wasn't a book out there like this before," she said.

Not only was she hopeful of promoting understanding and inclusion, she said she needed to be the person 'Little Carly' needed.

"When I was younger I felt very, very alone," Ms Findlay said.

"I felt like I didn't have any friends... didn't have a place in the world."

She discovered a sense of community after becoming a fan of bands such as Savage Garden and Southern Sons and musician Kevin Mitchell.

Her 'fandom' had since come full circle.

"Not only do I have fans of my own, which is a nice privilege and a weird thing to say, I am now friends with some of the people I was a fan of," Ms Findlay said. 

She advised other people with disability who were considering writing about their stories just to start.

"Just write and keep writing and make it public for a publisher or editor to see," Ms Findlay said. 

"Get involved with the writing community - it's really vibrant."

She is also involved in a Black Inc. project called Growing Up Disabled in Australia, which is calling for submissions.

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