Episode 6 - Carly Findlay: Life with Ichthyosis, Cancer, and the Power of Authentic Advocacy

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Transcript

Larissa: This podcast is recorded on the lands of the Wurundjeri people of the Kulin Nations. We pay our respects to the traditional custodians of this country and elders past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with neurodivergence, chronic illness and disability, and we chat with the voices that make our community so wonderful. Maddy, how are you?

Maddy: I'm good. I'm tired, but happy to be here. What about you?

Larissa: Love that for you. Not the tired part, though. I'm good. I think I'm thriving today and full of energy.

Maddy:That is fantastic to hear.

Larissa: I'm going to kick off with a recommendation for you. Today's recommendation is a podcast by Chanelle Morris, who's one of our lovely Spoony ambassadors. It is called Disability Rewired. She's just launched it this week and it's talking about her experiences as a disabled person, but she's also got a co-host who is a carer for her brother who has a TBI (Traumatic Brain Injury), so definitely recommend listening to that one. What have you got for me?

Maddy: Yeah, that sounds fantastic. I'll have to tune in. I have got a book for you. It is a book called Thunderhead by Sophie Beer, and it's a heartfelt and hilarious middle grade fiction book about hearing loss, friendship pressures, and rediscovering your identity after acquiring a disability at a young age. It is such a fantastic read. I really can't recommend it enough.

Larissa: Sounds great. Today we're going to be chatting with our Spoony ambassador Carly Findlay. Carly is an award-winning writer, speaker, and appearance activist. Carly also works part-time at Melbourne Fringe as their access and disability lead. She writes on disability issues for publications, including ABC Daily Life, and SBS.

Maddy: Carly was named as one of Australia's most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards. She has also received a medal of the Order of Australia for her work as a disability advocate and activist. She has appeared on ABC's You Can't Ask That, and Cyberhate with Tara Moss, and has been a regular on various ABC radio programmes. Carly has written an amazing memoir called Say Hello, and has edited the book Growing Up Disabled in Australia. I would also like to add that Carly has the most fantastic wardrobe, it's so colourful and fun, and it is definitely going to brighten up your Instagram feed.

Larissa: For those who don't know you, Carly, could you just share a little bit about yourself and who Carly is?

Carly: Sure. Hello. Thank you for that lovely introduction. I'm Carly and I'm a writer and speaker and appearance activist. I know that You Can't Ask That just went on to Netflix maybe four weeks ago and I'm getting a lot more people now following me on Instagram, because I think it's on Netflix worldwide.

Larissa: It is, yeah.

Carly: And I was in the shop the other day and I asked for something and then the sales assistant came back after she served me and she said, "Oh, I've seen you on You Can't Ask That. It's on Netflix now." So I said, "Oh yeah, thank you."

Maddy: Oh, that's so fantastic.

Larissa: I've been re-watching all of those episodes. It's so great that they brought it on Netflix. It was a few years ago, but obviously evergreen. There's some really great episodes in there.

Maddy: Yeah, it's fantastic. Very exciting to see you get the reach that you deserve.

Carly: Thank you. It's been a bit weird though. I had a really weird situation yesterday, actually, where someone had just watched the show, and they followed me and liked a whole heap of my posts. And I noticed they had a really ableist username, and I actually wrote to them and I said, "I don't know whether you realise, but your name has a slur in it and this is why it's harmful, and I'm an activist and I'm trying to educate." Well, they got really defensive and told me that my message has made them really anxious for work the next day, and I'm like, "Well, part of being a good ally is sitting with your discomfort, and here's some information about this," and then they ended up unfollowing me. I'm like, okay, great. You're not for me. I'm not for you. I hope you change your username.

Larissa: Some people just aren't worth the argument as well if it's just... Yeah.

Maddy: But good on you for trying.

Carly: It was really interesting, because they were like, "Yeah, I just watched you on You Can't Ask That, and I watched the episode that the slur pertains to," and I'm like, "But you didn't see to change it?"

Larissa: You didn't put two and two together.

Carly: Yeah.

Larissa: That's disappointing.

Maddy: That is disappointing. Ichthyosis is a rare and extremely painful skin condition. How do you typically describe it to people, and how does it affect your day-to-day life?

Carly: I describe it as making my skin red and scaly and sometimes painful, and susceptible to infection, and it can be really tricky to do a lot of things in the day if I'm particularly pained, or it can fatigue me a little bit as well. So my day, I'm just used to it, living with it all my life. It's a genetic condition that won't go away. There's no cure for it, and I'm not looking for a cure, at least not for the appearance.

There's a lot of things that I could use to reduce the redness or to stop the scale, but they have a lot of side effects, so I choose not to take them. And so every day I start my day with having a shower and then putting on moisturiser, which for me is liquid paraffin, soft white paraffin, which is similar to Vaseline or Dermeeze (I get it made up at the chemist) and then I let that soak in and then I get dressed and start my day. I just go about my day like most people do, but I do encounter lots of tricky social reactions, which can be harder than the medical situation.

Maddy: Absolutely.

Larissa: Are you able to share a bit more about what it was growing up disabled and navigating this from such a young age, particularly in a small country town?

Carly: That was really weird because one, I didn't acknowledge it as a disability then because I saw disability as Paralympians and people that were portrayed really badly on tabloid TV shows, and I didn't identify with either of those, and the town that I grew up in was really small. It's near Albury and it is very white and very small-minded at times and quite racist and ableist, and so I found that really tricky because there was no one else that looked like me. There was one disabled person, visibly disabled person, in my year, but I still didn't relate because we had such different disabilities. I didn't know about the social model of disability then, and I didn't know how diverse disability was, and so that was really tricky. When the referendum happened just recently for the Voice to Parliament, I noticed that that town had an 18% yes vote. And so that says how little it's advanced.

Maddy: That's pretty telling.

Carly: And my mum was the only Black person in the town for a very long time as well, and when I grew up there, it was very religious. I think it still is. And there'd be talk about how my parents are Black and white and they've sinned and that's why I'm like this, and that's just not true. That's not how genetics works, but anyway.

Larissa: Wow, that must have been really tough.

Carly: Yeah, it was. It was quite lonely and I couldn't wait to get out. I couldn't wait to move to the big city.

Maddy: I love following you on social media.

Carly: Thank you.

Maddy: Your outfits always bring a smile to my face.

Carly: Thank you.

Maddy: And you're just so fashionable and you're an incredible writer. To me, you seem like someone who's always been so authentically themselves and it's really inspired me to be myself.

Carly: Thank you.

Maddy: Have you always been like this or has it been a journey getting there?

Carly: I would say that for about... Well, I've been writing online for a long time, since 2000 maybe, in various ways, like on Diaryland and MySpace and things like that. And for a while I didn't ever really talk about ichthyosis because I was worried about how my photo might be misused, and then it was misused when I started blogging proper in 2009. I started blogging with a purpose to share stuff about my skin condition and wider life. And in 2013, my photo was misused on Reddit. It was shared on a horrible forum. I think Reddit may be better now, but back then it was really quite awful. And that made local and international news. And so I realised my worst fear had happened and it wasn't the end of the world. In fact, it probably boosted my profile a lot.

And I wanted to be the person who I needed when I Googled, or not Googled, because I was using the internet in the '90s, so when I was typing in to Ask Jeeves then, I wanted to be that person who I could find, because I found people online with ichthyosis when I was a teenager. So I've always tried to be me, but I used to work for the government, and that's got a really strict social media policy, where I tried not to write about my work. And there was a lot of stuff I kept away from the internet, and I still kind of follow that as well. I do talk about work, but I'm very much like when I type about Melbourne Fringe, I'll see with my Melbourne Fringe hat on and really be authentic there, also authentic with paid partnerships.

I hate reading a post and then finding out right at the bottom there's an ad. I want it to be up front. And also just talking to an audience. I would talk to friends or people I met in the street, and I get a lot of people stopping me in the street now and saying they read my blog or they followed me or watch You Can't Ask That, or whatever. So when I meet people who follow me, I always treat them like I have been treated by people I admire, asking them their name and thanking them for following me. And sometimes I ask them for if they want a photo, which sometimes they do. So I hope to be authentic, and I'm also really mindful of accountability and making sure that if I do say something out of line that might be inappropriate, or that I didn't know that was inappropriate and someone's taken the time to educate, I either remove the post or write about why it's bad.

Larissa: On the topic of authenticity and community, how important has it been for you to connect with other disabled people?

Carly: It's been amazing. The internet's incredible, and I think right now we're seeing with Elon Musk and Mark Zuckerberg that are just decimating the platforms that brought us together. That's a worry, but also remembering the communities we facilitated is important and that we can still keep those communities. I manage a few Facebook groups and I'm really mindful to keep them really pleasant and accessible and informative, and I think that the internet is such an important way of doing that, meeting people online. I hope it continues. And I think it's a real privilege to say, just quit Twitter or X or Facebook, because those places are where people are.

Larissa: And for some people, that's the only way they can connect with others as well. So keeping those safe spaces is super important, especially with everything going on at the moment.

Hey, Maddy, I want to talk about something that's been a total game changer for the neurodivergent, chronically ill, and disabled community.

Maddy: Oh, you mean Spoony?

Larissa: I do. But today I want to focus on one of their standout features, the journal for symptom tracking. Whether you're managing flare-ups, trying to spot patterns, or just need a space to unload your thoughts, Spoony's journal is a tool you didn't know you needed.

Maddy: And it's so easy to use. You can track how you're feeling day-to-day, jot down notes about your symptoms, and even tag triggers or treatments to see what's working and what's not. Over time, it helps you make sense of what might otherwise feel totally random.

Larissa: Plus you don't have to worry about ever feeling judged. It's private, secure, and designed with empathy in mind. It's like having a health diary that gets you.

Maddy: Honestly, it's perfect if you're looking to take charge of your health while staying in tune with yourself.

Larissa: So if you're ready to track your symptoms, find patterns and gain some real insight into your health, download Spoony now and check out their journal feature. It's a little extra support in your pocket right when you need it most.

Maddy: Spoony. It's more than just an app, it's your safe, stigma-free space for friends, support, and now powerful tools like symptom tracking.

Larissa: You can download it in the App Store or Google Play and try it for free today.

And what have you found has been the significance with community throughout your journey and what you've seen with other people?

Carly: I think that when disabled people share their stories, it gives other disabled people who may not feel like they're disabled enough, or they may not feel like their disability is valid or have had bad experiences in a community, I think it helps them come out to an extent and realise that they are disabled and that they have a right to ask for access and they have a right to express themselves in an authentic way as they are. I've definitely seen that. I think one of the challenges though of that is sometimes me, as a person with a public profile, has to help people unlearn their ableism and their internalised ableism. And that can be quite tricky in having to take on that trauma that they have and then hold their hand or, you encounter rejection or rudeness when they aren't comfortable with their own internalised ableism. So I find that a little bit tricky at times, but I think it really is important to make people see what's possible and connect.

Larissa: That'd be really hard having such a big platform, having to set those boundaries with people as well, because I think your advocacy, while it's such an amazing thing, I imagine it would also take a lot of cognitive load for you, particularly with you've got so much going on in your own life personally and professionally. You've shared some of your journey online about your cancer diagnosis, I believe it was ovarian and endometrial. What has this journey been like for you and how are you doing now after finishing treatment?

Carly: Thanks for asking. It's been a lot. I was joking to a friend the other day. We were doing a Taylor Swift paper doll book with her daughters who are young, although I probably would've done it anyway as an adult.

Larissa: That sounds fun.

Carly: Yeah, it was fun. And Taylor has a costume in there from one of her tours where it says "A lot going on right now" with the t-shirt that said "A lot going on right now." And I said, that is how I wanted to wear that t-shirt to announce my cancer diagnosis because it felt like it was a lot going on. So I went overseas on this amazing trip and it was around getting to know my family and around South African segregation laws and discrimination. And then I went to France on an influencer type thing, to Avène, which is a hydrotherapy centre with--

Larissa: That looks beautiful.

Carly: It was so good.

Larissa: I saw that.

Carly: --hydrothermal springs. And I did two and a half hours of hydrotherapy a day, and that really prepared me for what was to come. I didn't know that that was happening yet, but before I went overseas, and during overseas, I had a really sore tummy. I just had lots of diarrhoea and weight loss that I didn't realise that was happening. And also a lack of appetite and some other things, but mostly those were the things that were the flags. And I'd had all these tests before I went overseas and they said, "Yeah, you're fine to fly." They thought it was a hernia. I think that hernia was the tumour.

And then when I was overseas, I was still having those problems, but I was just getting used to it. I feel like women maybe just, "Oh, this is how it is now." And then it was annoying because I couldn't eat everything that I wanted to eat overseas. There was such good food, but I was too full or I just have to go to the toilet immediately afterwards. And I ended up getting really unwell at the airport on the way home, which is great because it meant that I lasted the whole trip seven and a half weeks without any particular medical emergency. And so I had to get a wheelchair to the plane, to the gate.

And then as soon as I got home, I called the doctor to get into the GP, and I got into the GP that day and then they sent me to the hospital because they said I might have sepsis in my stomach. And then I went to the hospital and he'd written me a letter to say this was urgent, but that doesn't matter when you get to emergency. I still had to wait five hours. And when I was in the hospital in ED, they kept on asking me where have I travelled overseas? Because I'd been to Africa and because I'd been to somewhat of a medical facility in France, I had to be segregated. I had to be quarantined because I'd just come back from Africa, although that was three weeks prior. And so I became a private patient in a public hospital just having my private room, which is great because who wants to be in a public ward when you're in hospital?

Larissa: That sounds nice.

Carly: And the doctor, he came in at four in the morning in emergency and he said, "Oh, can I see some photos of you? How much weight have you lost?" And I said, "I don't weigh myself." And he was asking me about the photos to compare my size. And then he said, "And you've been having all these symptoms?" I said, "Yes." And he said, "All of these symptoms together aren't bowel issues, they're ovarian cancer." And he said, "So you might have it."

And then that was four in the morning. I don't think there's a good time for having a conversation at four in the morning about anything, let alone the fact that you might have cancer. So I had no sleep because I'd been on the plane that night before. I only arrived back in Melbourne at five the previous day. And then I got moved. And from then on, literally the day I got back was just maybe cancer. And then I had a few appointments to see whether I should go ahead with the hysterectomy. I could have not, but they said that if I didn't, then it would get worse. And that was the only way that they could test by removing.

Larissa: So is that the only way they can diagnose it as well?

Carly: Yeah, so they could diagnose it... It's very hard to test in early stages. So for me, the tumour was so big that if they did a biopsy before the hysterectomy, that could spread the cancer. So instead of spreading it... So they did a few tests, they did blood tests and they did a needle in my stomach, and then they did maybe something else, I can't remember, until they couldn't diagnose it and then they had to do a hysterectomy.

Larissa: That's so much to process in such a short time, coming off a flight, being quarantined, probably being sleep-deprived and just having all of that.

Maddy: Being jet-lagged as well as full-on...

Carly: So within a month of getting back, I had the hysterectomy. And the tumour wasn't really painful until maybe I knew it was there. And then when I knew it was there, I was noticing when I'd walk or when I'd sit, I'd get a dull pain. And then they did that. Fortunately, potentially having cancer put me on an expedited list for surgery, so I had the surgery within a month.

And that was, yeah, I didn't realise, I'd have to take more time off work and it's a six-week recovery period for that. I think I was back at work at three weeks because I just worked from home. I got quite lonely. And then having to come to terms with having a diagnosis and then waiting for treatment, I think that's the... The hardest part, I think, has been the waiting. So waiting to see if I had cancer and then waiting for the operation. And then I was diagnosed with cancer on the day of the operation, and then waiting to have the chemo. You actually have to wait to see what type of cancer and what type of treatment may affect you.

And I think every week the surgeons would have a meeting and then mine was pushed off for a fortnight, and so I had to wait longer to see what would happen. And just that weight has been really hard, not knowing what to expect, not knowing what the surgery will be, not knowing what the treatment, chemo, will be, then not knowing whether the side effects will come on from the chemo. Once you're doing it, it's fine, I think, because you know what to expect, but it's the wait. And now the wait is knowing whether the treatment works. So I had four rounds of chemo and then I had four, five weeks of every day of radiotherapy.

Maddy: Wow, that is a marathon.

Carly: It's been a lot. So it's been like seven months, I think, of this. So I finished chemo in October and I finished radiotherapy in December. So it's been a lot to process.

Larissa: It's like a full-time job no one asked for on top of all your other things going on.

Carly: And I think the hardest thing was, because Ichthyosis is so rare, there was no information about how ichthyosis interacts with chemo and radiotherapy. And so I had made a decision to be really public about my experiences because I didn't want someone to be diagnosed and then not know. When I knew that I'd probably have to have a hysterectomy, I posted in a Facebook group that I actually moderate around Ichthyosis, and I posted anonymously and I said, do you have any experience with Ichthyosis and menopause? And I actually got really disappointing messages back from people. One woman said, "Oh, just deal with it like any other woman." And I didn't put any context that I'm having a hysterectomy because I might have cancer, but also the dismissiveness and the "Just deal with it like any other woman" was quite an eye-opener. So that was an experience that I saw that not everyone's as supportive as I'd hoped.

Maddy: That's such a shame.

Carly: So for a while, my body didn't know what was cancer or chemo or radiotherapy or menopause.

Larissa: So many different interactions.

Carly: And I think also after an operation, after major surgery, if you have organs removed, your body has to get time getting used to where the organs are now placed as well. So that's tricky. So I'm feeling all right now, I'm a bit tired. I can't do everything in a day that I would do normally prior to cancer, but I didn't feel sick before and that's been really weird as well. I didn't really have, other than the diarrhoea that was constant, I didn't have any particular sickness that would make me feel like I might have cancer.

Larissa: Thanks for sharing that.

Carly: That's okay.

Maddy: Thank you.

Carly: I've never talked about my poo so much as I did last year.

Larissa: What is '25 looking like for you?

Carly: Hopefully cancer-free. Hopefully I'll get some work. I know that you've invited me a few times to work, so I've been really grateful for that. But I feel people have given me space, which is great, but now I can work, but sometimes I feel like I might've been forgotten because I've been overlooked for opportunities. So hopefully I can get some work. I'm going to be really proactive in putting myself forward. I really want to finish the writing project that I went to South Africa to start, because I want to write about what I learnt and who I met there. That was amazing, and I do want to write a kid's book. I've been saying that for ages, but I really want to write a kid kid's book.

Maddy: So exciting.

Carly: So I think those things, but also rest. I really hate exercise, but I had to start it because there's a risk of low bone density and premature ageing, so I've started to go to the gym, which hasn't been too bad. I've started some Pilates. My goal is to get myself strong enough to start roller skating again because I'm too scared of falling while I might have brittle bones. I bought some padded shorts, which might help. We'll see. We'll see. So hopefully just keeping on doing what I'm doing, and also I think that maybe this has taught me to rest a bit more, and so knowing when to say no and knowing when to stop has been... Because I think lots of disabled people push ourselves to prove that we're not as disabled as people assume.

Maddy: Absolutely. Yeah, I totally relate to that.

Carly: The other thing that I didn't do a lot of last year is wading into online arguments, which is really good because I just didn't have the energy and I think I'm going to continue with that because it was great not having a say in everything. I'm like, someone else can deal with that.

Larissa: It's not my business. I mean, it is your business, but also sometimes it's nice to step back. What would your advice be to young people who are new to the disabled community?

Carly: Find other people who are disabled, read books by disabled people. You mentioned Sophie Beer the other day. Sophie's so great. Also books like Growing Up Disabled in Australia, which I edited.

Maddy: Fantastic book.

Carly: Thank you. Eliza Hull's We've Got This, particularly if you're a parent and you find yourself disabled. Dinesh Palipana's book Stronger. I think the things that Jamila Rizvi writes online are really useful as well. Who else? Em Rusciano's Ted Talk is really useful.

Larissa: I love her content.

Carly: Yeah, Em's content is great. I really wanted to go to her show last year, but I had to stop going into crowds when I was having chemo, and it was like the show happened on one of the days I had chemo and I can't go.

Larissa: That's hard.

Carly: So finding really good role models. Keah Brown in the US writes really great stuff on being a young person who's disabled.

Maddy: Yeah, I love her work.

Carly: She's so great. And Alice Wong. Alice Wong is the queen of--

Maddy: The queen.

Carly: --disability activism, and just so great. And her community that she fosters, Disability Visibility Project, is so great. And her anthologies, Disability Visibility and Disability Intimacy. The other book that I really recommend as well, if you're new to disability, or even if you've been in the space for a long time, is Care Work by Leah Lakshmi. And it's a book around--

Maddy: It's so good.

Carly: Yeah, it's so great. It's a book around mutual aid and caring for other disabled people and setting boundaries, and it's so great.

Maddy: Yeah, such a great read.

Larissa: Great recommendations in there.

Maddy: Maybe you should join out Spoony book club.

Carly: Yes, I would love that. I actually have had a hard time reading this year because I've had such bad brain fog and that's something I've never experienced before. And so just the level of concentration has been really hard. So I need to get back into reading.

Maddy: Oh, it's so tough with brain fog. I also have brain fog and I'm a big reader and it's a hard thing to balance, so I feel you there.

Carly: It's really hard. And also I listened to audiobooks, but then I'm tired and then I fall asleep.

Larissa: They always seem to put me to sleep. They are great, though, when they're narrated by the author themselves.

Maddy: Yes, I love that.

Larissa: When it's that monotone voice, it's a little bit hard to listen to.

Maddy: What do you think it takes to be an effective advocate?

Carly: That's a good question. I think resilience, and I've given some examples of how tricky it can be, but also knowing that your disability isn't the only thing that you should be fighting for. Advocating for the wider community is really important, and in my work and in my everyday, I make sure that other people who have different access needs to me are catered for, because that's really important to acknowledge that there's such a spectrum of disability and access needs. Also learning and listening to other disabled people and focusing on a big community, particularly amplifying First Nations, and Black and Brown disabled people, because often the disability community is very white.

Maddy: Absolutely.

Carly: And so making sure people of colour are prioritised. And I also think that self-care is really important, setting boundaries and knowing that you don't have to go in and talk about everything. I'm wondering how long I can keep saying, "Sorry, I'm on leave right now. I'm not doing activism" for, because I've been doing that on lots of people ask me stuff on Twitter and I'm like, "Hey, sorry, I'm not doing this at the moment." So knowing that you can pass it on to someone else I think is important.

Larissa: How has being disabled shaped your identity?

Carly: I think it's been a real journey to get there, to identify as disabled, but once I have, it's been quite liberating and it's been really great. Sometimes I hear people say, "Oh, don't make disability or neurodivergence the main part of your identity." And I think that's a fair point, but also don't put it aside or dim it down to make other people feel comfortable. So I think knowing that you can identify as this and be yourself and not change, I think it's really important.

Larissa: You can't just put it aside for a minute physically.

Carly: It's always there. And so I think it's made me more outspoken and it's made me more empathetic and more aware of access needs and different representation in media and all of that. So I think that has been a good thing, and in a positive way. But also there's the idea that we always advocate.

Larissa: That is hard. Where can people find you, Carly?

Carly: Everywhere. Well, they can't come to my house, but they can find me everywhere online. I have a blog at CarlyFindlay.com.au and I'm @CarlyFindlay on X or Twitter. I will never call it X. Instagram, Bluesky maybe, Threads, and also on LinkedIn, Carly Findlay, and on Facebook, Carly Findlay OAM there. I write a lot and I post a lot of stuff, not just about Ichthyosis, but food and fashion and what I do in Melbourne and the arts.

Larissa: Awesome.

Maddy: You're really missing out if you're not following Carly.

Carly: Thank you. That's so nice. Thank you.

Larissa: I love your food content as well. It's always great. Thank you so much for coming in and joining us today.

Carly: Thank you.

Larissa: It's been great having you on the show--

Carly: It's been fun.

Larissa: --and we look forward to what you do with 2025.

Carly: Me too. I can't wait for this year. I hope it's... Well, last year wasn't terrible. It was pretty good, but I hope it's less dramatic than last year.

Maddy: We'll be crossing our fingers for you as well.

Carly: Thank you. Well, me too, when my fingers stop being numb.

Larissa: This podcast is brought to you by Spoony, a safe space for neurodivergent, chronically ill, and disabled people to make friends and find support. Spoony is the world's first social app designed with accessibility at its core. If you liked this episode, it would mean the absolute world to us if you could hit subscribe or share it with a friend. If you'd like to join our Spoony community, you can download the app via the App Store or Google Play. And if you'd like to keep up to date with us on social media, you can follow us by the links in the show notes.