Carly Findlay's Blog

I often talk about the importance of good representation of Ichthyosis. I don’t mean only positive stories. I mean, when our stories are told by people with Ichthyosis, when headlines and articles aren’t sensationalised and stigmatising, and when there’s advocacy for the community as a whole.

This week I read a story of life with Ichthyosis that has affected me greatly. I am emotionally drained, angry and sad. I am truly worried about the harm it will do to our community, especially for young people who might read it in the hope of connection and self acceptance. What I read didn’t feature connection or self acceptance. There was so much internalised and external ableism. And sadly, Ichthyosis, Neurodivergency and Complex Mental Health was an excuse for bad behaviour. (The one thing I did take from reading this work was that it confirmed, yes I was treated terribly by those who wrote it.)

We need to see people with ichthyosis leading ordinary lives. Awards and lavish rewards don’t solve ableism for the individual or the wider community. And we need to raise the expectations that people have of us – by behaving well and taking accountability when we don’t. There’s room for many voices, and also a responsibility to help, not harm.You can’t claim to stand up for others when all you’re doing is standing up for yourself.

As a public figure, and a role model/mentor in the ichthyosis community, I believe it’s important to represent the community well, to offer support and hope for new parents of babies with ichthyosis as well as young people and adults, and also take accountability when you make mistakes and cause harm. I take my role very seriously, and I am so grateful for those who’ve done so much work to reduce barriers and stigma. I am continually learning, growing and improving, because I am passionate about hearing and amplifying many experiences of people with ichthyosis.

And I think that you can’t reject the term “disability” and shun advocacy as a public figure, while benefiting from the work so many disabled people have done to dismantle ableism and barriers. When you’re rewarded on the basis of your disability alone, it really is a product of low expectations.

I am thankful to my agent and editor for helping me craft Say Hello into a useful, respectful and community minded book that I am very proud of.

I have so many more thoughts that have kept me awake for hours. I feel the heaviness of vicarious trauma.

Image: a selfie of a woman with red skin and short dark hair.

The post On poor representation of Ichthyosis – by people within the community first appeared on Carly Findlay.

25 wonderful things that happened to me in 2025:

1 Starting Yoga and Pilates

2 Finding out I’m cancer free – my cancer level markers continue to be miraculously low 

3 Seeing the Yayoi Kusama exhibition at NGV

4 Filming A Bite To Eat with Alice for ABC

5 Enjoying beautiful friendships, inc making new friends – Kylie & Jacinta

6 Trinket collecting – I love my ceramic Igloo Party, JellyCats, Lenox Spice Village houses and miniatures

7 Seeing the Frida Kahlo exhibition at Bendigo Art Gallery

8 Being published in Owning It – Stories of Our Disabled Childhood (ed

James Catchpole, 

Lucy Catchpole and

Jen Campbell); and writing for two books published in 2026 – Crip Stories – A Mascara Literary Review Anthology (ed BeauWindon, Laura Pettenuzzo, Misbah Wolf & Katie Hansord), and Digital Accessibility Ethics: Disability Inclusion in All Things Tech (ed Lainey Feingold)

9 Getting my face painted for Face Equality Week

10 Girls night with Hester and her girls 

11 party

12 Friends’ book launches – Jamila and Rosie, Ash London, Maxine Beneba Clarke Style By Sally,  Narelda Jacobs & Karina Natt

13 Celebrating first cancerversary with Danielle

14 Receiving a quilt made with by my Fringe colleagues 

15 Trips to Sea Life Aquarium and Werribee Zoo 

16 Trip to Metcalfe with Adam

17 HoneyChild’s American feast 

18 Seeing Christmas house 

19 Seeing Come See Me in the Good Light, a film about Andrea Gibson, at MIFF

20 Aussie Hottest 100 – a wholesome & nostalgic cultural moment.

21 Melbourne Fringe Festival – Boil Over’s Meet Me at the Disco at Fed Square, Olivia Muscat’s show – Is Anyone Even Watching?, Healesville trip to see Beneath with my work wife Pauline 

22 Frocktober – an honour to be an ambassador. Being styled and having the photoshoot was joyous, I’m grateful to brands giving me dresses, I loved frocking up & sharing my story of Ovarian Cancer, & I’m proud of raising $10,000+ for OCRF (thanks to everyone who donated)

23 Writing for Frankie on disabled musicians – Eliza Hull, Elly May Barnes & Emmanuel Kelly

24 Attending Erstwilder party &  Bus Stop Films summit

25 My hair growth! 

Thanks for being here

IDs:: pics of the above experiences

The post 25 highlights of 2025 first appeared on Carly Findlay.

•FROCKTOBER•
 
It’s Halloween. And this is scary. 

There is no government support for people who suddenly get sick. The fair go for Australians doesn’t exist.

We need a safety net.

Sickness Allowance no longer exists. The Disability Support Pension doesn’t cover people who have cancer, unless they are terminal with a life expectancy of less than two years. People might be eligible for JobSeeker, but they may have to look for work (if they don’t get a medical certificate), and claiming JobSeeker depends on savings, income and assets. (I received JobSeeker for about six weeks,  only after I spent a lot of my savings.) There is no access to just a Health Care Card, even when costs of prescriptions and over the counter medication is mounting.

Even if someone has a primary disability, and it’s exacerbated by the cancer or cancer treatment, they still might not be eligible for the DSP. This was the case with me. And the NDIS also doesn’t cover people with cancer (or many disabled people).

Some people can cope with work while going through cancer treatment. Some people can’t afford not to work. And they have to juggle family caring responsibilities.  Many people have to draw on their savings and deplete their sick leave -if they have any. They may not have access to income protection insurance. Family members often provide financial support, and GoFundMes are set up – sometimes with embarrassment.

I had to stop work for a few weeks after surgery, and then during chemotherapy. I was able to return to my part time work while I was doing radiotherapy.  For many months, my income was about $220 a week.

While a lot of cancer treatment is free, prescriptions are not free, and the cost of living continues (and rises).

On this final day of Frocktober, I call on the government for better welfare supports for people who suddenly get sick with cancer and other serious illnesses – we need a Sickness Allowance and Health Care Card.

Because we should not have to stress about money during one of the most difficult times in our lives. 

Donate to OCRF: – thank you!

IDs: Carly in wedding dress at Bunnings.

The post Frocktober: calling for more government support for people who suddenly get sick first appeared on Carly Findlay.

Did you know:

Ovarian cancer is an umbrella term for more than 30 different subtypes, which vary by cell of origin, genetic mutations, and therefore, how they respond to various therapies although options are limited. Your support can find better treatments for this complex disease.

My fundraiser page is here.Thank you!

I’m wearing an old Gorman x Fred Fowler dress, Therapy Shoes boots, Erstwilder peacock brooch and Blue Illusion pearl necklace.

Images: Carly, a woman with red skin and curly dark hair, wearing a silky dark green dress with blue and red birds on it, a long pearl necklace and a brooch that’s a peacock feather on her dress. She’s got black boots on. She’s standing near a marble wall, smiling.

The post Frocktober: Ovarian Cancer is a complex disease first appeared on Carly Findlay.

Frocking up my way to support ovarian cancer research.

Did you know that the Ovarian Cancer Research Foundation (OCRF) was established in 2000 and is the leading independent funder of ovarian cancer research in Australia.
They seed-fund brilliant scientists across the nation to develop ways to better detect, treat and prevent ovarian cancer. Your donation dollars will help continue their amazing work.
Donate to my Frocktober fundraising page. Thank you!

I’ve always loved to dress up, but even more so since my Ovarian and Endometrial Cancer diagnoses in 2024. Fashion is fun, defiant and allows me to take up space – something that isn’t always afforded to disabled women. I love bright colours, big sleeves, bold prints and statement dresses.

Today’s prompt is “favourite frock”. I have so many favourite frocks, so these pics are my fave pics from the Frocktober ambassador photoshoot. I am wearing Aje dress over Suprë top, Dinosaur Designs bangles (from stylist) and rings (my own) wicker sunglasses and gem headband (from stylist), Therapy Shoes pink boots and necklaces. Stylist extraordinaire was Karinda Mutabazi

Gallery: three still photos of Carly, a woman with red skin and short dark curly hair, wearing a purple floral dress with big sleeves, hot pink boots, a stack of necklaces, jewelled headband and big bangles and rings. Each pose is defiant and joyous. The background is purple and teal.

The post Frocktober: my fave frock first appeared on Carly Findlay.

Some people have asked if I embarrassed to talk about my cancer – specifically because it has to do with parts of the body that are often kept private. Ovarian cancer is about reproductive organs and gynaecological health. 

Look, before I was diagnosed with Ovarian and Endometrial Cancer in June 2024 , I very rarely talked about this stuff. I did talk a little about my period, but that’s it. 

And since I was diagnosed, I talk about it a lot. I am no longer embarrassed to talk about my ovaries and vagina, sex and menopause. I especially talk about menopause, because I knew nothing about it when I was rudely launched into it after surgery and Ovarian and Endometrial Cancer diagnoses.  Historically, women and gender diverse people have kept it quiet, so current generations going through menopause didn’t know what to expect. I’m so grateful to women like Mona Eltahawy (editor of Bloody Hell – Aventuras in Menopause from around the World), Em Rusciano (creator of Rage Against the Vagine podcast), Patrina Jones (creator of Rage Against the Menopause podcast) and Shelly Horton (writer of I’m Your Peri Godmother book) who have created brilliant resources for people going through menopause now and into the future. 

Shame and stigma around reproductive organs and gynaecological health may mean that symptoms are ignored and not spoken about. Some people may feel embarrassed to raise it with their family, friends and even doctors. So illnesses like Ovarian Cancer are not detected early enough. 

Talk about your reproductive organs and gynaecological health. It might save your life, and the lives of others. 

I am raising money for Frocktober – to support the Ovarian Cancer Research Foundation. My Frocktober fundraising page is here  – please donate and share this post. 

Today’s Frocktober prompt is “powerful pants”. I am wearing black pants from Witchery, a black vest from Target Petites, a mesh floral top from Marimekko, a rose gold heart pendant from Mimco, and gold shoes from Rollie. 

Images: Carly, a woman with red skin and short dark curly hair, wearing a black vest over a floral mesh top, and black pants, and rose gold shoes. She’s smiling, standing near a stone wall.

The post Frocktober: no more shame and perfect pants first appeared on Carly Findlay.

Putting the fabulous into fundraising for ovarian cancer research

And this is how your Frocktober donations help researchers: $36 helps to secure vital resources needed to collect and analyse patient samples, $58 supports researchers to grow ovarian cancer cells, giving them the opportunity to study the disease, $100 supports research to analyse the DNA from cancer cells. Head to my Frocktober donation page to make a difference today. If you can’t donate, please share this post. Thanks!

Today’s Frocktober prompt is “Gorgeous Greens”. I’m wearing a dress gifted to me by St Frock, sequinned boots from Style Tread, bag by Mokuyobi Threads and floral sunglasses from the opshop.

Video: Carly, a woman with a red face and short dark curly hair, wearing a long green floral dress with burnt out detail, green sequin shoes, a bag that’s a lime wedge and white floral sunglasses. She’s walking, standing still, taking off her glasses at Federation Square.
Music is Green Light by Lorde. Lyrics are: “But honey I’ll be seein’ you ′ever I go
But honey I′ll be seein’ you down every road
I′m waiting for it, that green light, I want it.”

The post Frocktober: Gorgeous greens first appeared on Carly Findlay.

This is why frocking up for research is so important!

If ovarian cancer is diagnosed at stage 1 (when the cancer is confined to the ovaries or fallopian tubes), the five-year survival rate is around 90%. There is still no early detection test for ovarian cancer so funding for research is pivotal to raising survival rates.

Donate to my Frocktober fundraiser today! You can also share the link with your networks. Thank you to all the very generous donors so far – you’re so appreciated!

Today’s Frocktoher prompt is “matching set”- and this is one of my faves from @leonard.st , it’s a few years old now. I always feel so put together in it. Boots are from @therapyshoes.

Image: Carly, a woman with red skin and short dark curly hair. She’s wearing a purple and mustard floral blouse and skirt, and black boots. She’s standing on the porch, against a brick wall, smiling.

The post Frocktober – why an early detection test is vital first appeared on Carly Findlay.

•FROCKTOBER•

I wish I knew this info in early 2024, when my cancer symptoms started appearing. 

The least I can do is pass the message on to people with ovaries. 

I would love you to save and share this post please. It could save a life.

My dress is from @aje, styled by @mutabazi_k for the @frocktober_ocrf ambassador shoot.

Please consider donating to my Frocktober fundraiser – frocktober.org.au/fundraise/carly-fin... (link in bio), or share the link with your networks. Thank you to all the very generous donors so far – you’re so appreciated!

Images: two purple and teal squares featuring Carly wearing a purple floral dress, leaning on a table on her elbow, pointing up. Frocktober logo in the top left, donation details in bottom right. 

Text on image 1: Symptoms of Ovarian Cancer to look out for:

abdominal bloating

• difficulty eating or feeling full quickly

• frequent or urgent urination

• back, abdominal or pelvic pain

• constipation or diarrhoea

• menstrual irregularities

• tiredness

• indigestion

• pain during intercourse

• unexplained weight loss or weight gain

Source: Cancer Council Australia

Text on image 2:

Facts about of Ovarian Cancer:

• there is currently no early detection test for Ovarian Cancer – and a cervical screen doesn’t pick it up

• fewer than 50% of people diagnosed with Ovarian Cancer will survive more than five years

• around 40% of patients are under 60 years old

• the Ovarian Cancer Research Foundation (OCRF) works to create an early detection test, improve treatments and change survival outcomes.

Source: OCRF

The post Frocktober – symptoms and facts first appeared on Carly Findlay.

Last week when I was at SXSW Sydney, I bought a sneaky copy of Em Rusciano’s memoir, Blood, Sweat and Glitter. It’s not out til next week – it wasn’t meant to be on sale. I devoured half of it on the plane home from Sydney.

It is a vulnerable, brave, bold and funny insight into Em’s life over the last eight years or so. She’s recently been diagnosed with ADHD and Autism, and is knee deep in perimenopause. She’s an incredibly hard worker, and it’s her neurodivergence that assists her in hyper fixating to make brilliant things happen. A podcast during the pandemic! Socially distanced live music! Musicals! A podcast about perimenopause! Interviewing super stars! This book! But with that desire to create, perimenopause and neurodivergence, along with all the other things a 40 something mother, partner, public figure needs to do, living through a global pandemic, comes burnout – and the book casts a light on how debilitating this can be.

As well as Em’s insights, Blood, Sweat and Glitter has some really handy facts from experts, and space for readers to make notes. I especially enjoyed the inclusion of her life changing (for her, for us, for psychology practitioners and politicians and policy makers) National Press Club address, and in depth recollection of how she felt while writing and delivering it.

The parts told by those who know her well were also lovely.

Em’s memoir helped me understand my neurodivergent brain a bit more, and had some useful info about menopause (though I skipped the peri and went straight to the main event). I had the (partially diagnosed) ADHD tendency to want to interrupt Em’s stories with my own relatable stories. In the last year especially, I’ve outgrown who I was – I felt seen.

I read best through audiobooks, so I can’t wait to buy and listen to the audio version.

It’s a book for Em’s strong community. It’s a book for women & gender diverse people who aren’t quite sure if they’re neurodivergent or disabled but want to explore if they are. And I hope it was healing for Em to write, too. Bravo, Em Rusciano! (Rest soon.)

Image: a selfie of Carly, holding up a book called Blood, Sweat and Glitter by Em Rusciano.

The post Book review: Em Rusciano’s Blood, Sweat and Glitter first appeared on Carly Findlay.