You may have seen our faces around the Spoony community - but we thought we should sit down and share our story! In this episode, Larissa and Maddy from the Spoony community team chat all things lived-experience, employment, and life as a Spoony.
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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.
Life with neurodivergence, chronic illness and disability isn't always easy, but sharing our stories reminds us that we're never alone. On No Spoons to Give, we celebrate stories from across our vibrant community, diving into the highs, the lows, and everything in between.
Maddy: No Spoons to Give is the official podcast of 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.
Larissa: 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. We chat with the voices that make our community so vibrant and wonderful. I'm Larissa. I'm head of community at Spoony. And next to me I've got the lovely, Maddy Ruskin, who is our community manager. How are you, Maddy?
Maddy: I'm good. I'm feeling tired, but wired. How about you?
Larissa: I felt the same. Yeah, I had a big morning, but I'm really excited to be here.
Maddy: Same here.
Larissa: It's going to be good.
Maddy: So the reason we decided to start this podcast was because we wanted to create a safe space for people to share their stories and to help elevate the voices that make our community so vibrant. It's also just another way for us to connect with our community where we can go a little bit deeper and explore some important topics.
Larissa: And we thought today's episode... I mean everyone in our community has probably seen our faces a fair bit. So we thought we'd, I guess, go a little bit deeper into who we are and our backstory and what led us to doing this awesome work with Spoony.
Maddy: To kick off each podcast, we're going to be starting each and every episode with a recommendation we think our community will love. Larissa, do you want to kick us off with your recommendation today?
Larissa: I have a good one. Actually, a Netflix recommendation. So I know that you are more of a book reader. I'm more of a podcast, audio book type person. So my recommendation for the week, it's Take My Hand. It's a movie on Netflix, and it follows the journey of a woman who she got diagnosed with MS at age 28, which is my age right now. And it just sort of goes through her journey. I won't give the whole movie away, but it's really heartwarming. It's a beautiful story. And also one of my good friends... There's lots of horses in it too.
Maddy: Excellent.
Larissa: Which I love. One of the horse stunt riders is one of my friends.
Maddy: That's amazing.
Larissa: So that's like a big bias. I thought it was really cool though.
Maddy: So exciting to see your friends in projects, I think.
Larissa: Yeah. I was pausing it as well as like, "There's Lisa."
Maddy: I love that.
Larissa: What have you got for me?
Maddy: So my recommendation today is a book, it's a literary fiction book called Body Friend by Katherine Brabon. It's a book that was one of my absolute favourites last year. It just blew me away. It really shows the visceral realities of chronic illness through an unnamed narrator who's struggling with chronic pain. I also struggle with chronic pain, so I really related to a lot of the book and I really thought it was just a brilliant read that captures the repetitiveness and relentlessness of chronic pain in a way that I haven't ever seen before. So if you feel like having a read, feel free to check it out.
Larissa: That sounds awesome. I'll definitely be checking that one out. I'll check if I have it as an audio book as well.
Maddy: Yes, audiobooks absolutely count as reading.
Larissa: I'm such an audiobook girl.
Maddy: And it's such a great way to enjoy literature while doing lots of different things.
Larissa: Absolutely. I thought today we could probably kick off today's episode talking a little bit about our lived experience. So maybe, yeah, I guess we have different conditions between chronic illness, neurodivergence. Did you want to run me through a little bit, I guess a bit about you and your background and those type of things?
Maddy: Sure, sure. So I have quite the collection of chronic illnesses, which is I'm sure other people in our community can relate. It's a bit of a laundry list. I was first diagnosed with myalgic encephalomyelitis, ME, or more commonly known as chronic fatigue syndrome, CFS when I was 15. So I'm celebrating... celebrating. We're going to use the word, celebrating, my 13th anniversary with chronic illness this year. So I have lived with chronic illness for most of my life.
So adding to the list of conditions, I also more recently was diagnosed with fibromyalgia, long COVID, Raynaud's.
Larissa: Is Raynaud's the one to do with your hands?
Maddy: Yes, hands and fingers. The blood flows just not going to the ends of them weirdly.
Larissa: So that's like it gets cold and red.
Maddy: Very cold. Yes.
Larissa: Yeah. I've got a friend who's got that. It looks awful.
Maddy: It's really weird. You'll be needing a hot water bottle in summer for your toes, which is weird. And also weird because I struggle with temperature dysregulation. So I'm hot and then cold on the ends of my feet.
Larissa: And is that from a few different conditions or is that one particular condition that-
Maddy: Oh, they're not really sure?
Larissa: It's so hard to know when there's so much.
Maddy: I know.
Larissa: Overlap.
Maddy: It's like I need a detective to help me figure out what's going on. I'm sure people can relate.
Larissa: Yeah, absolutely.
Maddy: But in terms of other conditions, I also live with anxiety, depression, and complex post-traumatic stress disorder. I also have dyscalculia as well. But just a bit of a laundry list.
Larissa: Thanks for sharing.
Maddy: What about you? Oh, my pleasure.
Larissa: So I have got ADHD. I was semi-recently diagnosed with autism as well, which is something I'm still... It was kind of just throwing a spanner in the works for me, but also it makes sense. And endometriosis, which I suffered from throughout high school, but that was only diagnosed via surgery probably five or six years ago now.
Maddy: Wow.
Larissa: And it's something that's managed well. But in saying that, there's so many checks and balances I put in place in my life to make sure that nothing rears its ugly head. So as soon as I step out of that comfort zone, I'll get... Stress relief flares up my endo for me. So it can be fine, and then it can just completely flare up. But that's my terrible trio, ADHD... That's probably something that affects me day to day like my disorganisation, things with overwhelm, which is probably also definitely autism related as well. But yeah, that's a little bit about my background.
Maddy: Thank you for sharing.
Larissa: Yeah, thanks for sharing with me too. I feel like we've never had this discussion before.
Maddy: No, I don't think so. No, and it's really nice to be able to talk about it and not feel like you need to, I don't know, put in the comforting words to other people and be like, "Oh, it isn't so bad." That kind of thing.
Larissa: Yeah, I find myself always doing that too. And then it's also how much do you tell people?
Maddy: Exactly.
Larissa: One thing I've found really interesting is ADHD is, it's in the media a lot now and so many people are being late diagnosed, and then there's that amount of people who are like, "Oh, everyone's got ADHD," and telling people...
Maddy: So unhelpful.
Larissa: I know. It's just such an unhelpful thing to say. It's like maybe we didn't have the right tools to diagnose females back when we were struggling in high school. Anyway, I digress. But telling people I have ADHD seems to be quite accepted, but then doubling in, being like, "Oh, maybe I'll share with this person that I'm autistic as well," and people, they just react differently like they're less comfortable with it.
But yeah, what I love about the work we do is you can just talk about these things and the community we've made around that as well. I think it's really great.
Maddy: Yeah, absolutely. It feels like a totally different environment to the outside world. It feels quite safe. And just knowing that there's people who understand and are not going to be just judging you, it makes me feel just so comfortable. I've never felt so comfortable about my disabilities in a workplace before, so-
Larissa: I know, right?
Maddy: ... this feels pretty amazing to be honest.
Larissa: We might take a quick ad break, but after the ad, I want to talk to you about how your conditions, and for me as well, how it's affected our work and career. Because it's one thing to get diagnosed in high school, but then entering the world as an adult and the workforce is a different thing. So let's jump to an ad break and then we'll chat about that.
Hey, Maddy. Do you want to know what one of my favourite profile features is on Spoony?
Maddy: That you can use it to post more photos of your dog?
Larissa: I'll take any opportunity I can to post dog pics, but no. Did you know that Spoony allows you to share your support needs on your profile so that your new friends can understand you a bit better? On mine, I've got routines, quiet spaces, energy conservation, and visual schedules, because we all know how much I love mind maps and naps.
Maddy: That's so cool. Can I put energy conservation there? I have to pace my energy or else I get really exhausted?
Larissa: You absolutely can. There's so many cool profile features that make Spoony unique to any other social platform. You can also display your conditions or illnesses, share your interests, and let people know how your energy levels are tracking by using our signature Spoon status. I'd really encourage people to check it out for themselves. You can sign up for free using the link in this podcast, or you can find us in the app store or Google Play.
Maddy: So welcome back. So we're going to be talking about our diagnosis journey and talk a little bit about how our conditions have affected our careers. So, Larissa, tell me a little bit more about how your chronic illness and neurodivergence has changed your career path for the better or for the worse?
Larissa: Okay. So, A, a lot and B, for the better, but I'll go a bit deeper than that. So my background before this was as an osteopath.
Maddy: Wow.
Larissa: So in Allied health, so treating patients, which was not great for my undiagnosed ADHD and autism and also not great for my endometriosis. They were both undiagnosed at the time. So pretty much, yeah, I graduated, I think I was 21 or 22. Super young and just went straight into clinical practise seeing 15 patients a day.
Maddy: Wow.
Larissa: Back to back in a tiny little room. It was around '22, '23 that my endo pain started getting really bad. I was having surgeries and all of that, so lots of time off work. I also developed back issues after the surgery. So the job is quite physical for anyone who doesn't know you're lifting limbs of heavy men and all of that just constantly. So it was really rough on my body. Really rough on me mentally. And I also think I was just really young to be in a job like that because you are taking on a lot of mental load from other people.
Maddy: Absolutely.
Larissa: Yeah. So then after that, I went into a healthcare consulting role. That was a nightmare for my ADHD. But in amongst all of this too, I've been getting diagnosed, trying different medications, all of that.
Maddy: Of course, it all happens in the background, this kind of thing?
Larissa: Yeah, it's all happening. You're also figuring out through those years who you are and what your values are and what you like doing. And then a year ago I teed up with Nick from Spoony, our CEO, and I was like, "This just ticks every box for me." And where you work and what you do for work is such a big part of we spend so much time and energy doing it. I just really wanted to do something I love and that wouldn't flare up my symptoms. So that's I guess how I got here today.
Maddy: It's great to be able to do something that you love and you're passionate about and also that doesn't flare up your symptoms.
Larissa: Absolutely. What about you with your work and your chronic illnesses? What's been your journey there?
Maddy: I've had a bit of a weird and wonderful career because of chronic illness and neurodivergence. I was first diagnosed at 15 and I was pretty sick, so I was unable to go to school.
Larissa: Wow.
Maddy: And I was quite lonely. But I found comfort in film and television. I spent a lot of time with some fantastic TV shows and films. And I really felt like this was what I wanted to do. So I had a lot of passion for film and television, but also for increasing the representation of disabled chronically ill Neurodivergent people. Because I was watching these shows and I was like, "I do not feel like myself or the people that I'm talking to-"
Larissa: Especially back then too, it was probably really zero.
Maddy: Exactly. It really was. It was just people who were medical mysteries in house who were my representation, which is kind of weird.
Larissa: Or those operating surgical shows.
Maddy: Yes, so true.
Larissa: And medical mysteries, stuff like that.
Maddy: But then I eventually broke into the film and television world and I did quite a few roles that I could do in terms of it didn't flare up my symptoms too much. Alas, one can hope that things don't flare up your symptoms and then life happens and it does. So for a few years I was working within that field and I was really struggling to manage my health and also my career. And I was also not feeling really supported in terms of having to leave to go to medical appointments and things like that. And for someone who's a real perfectionist feeling like I'm not-
Larissa: Giving it balance and all that. And you only get a couple weeks of sick leave. That goes really quick when you have a chronic illness or multiple conditions.
Maddy: It does. It really does.
Larissa: Really just having a workplace that's flexible is a game changer.
Maddy: It's so good to have people who are aware of chronic illnesses. And also the other thing was I was hiding my chronic illnesses for a really long time
Larissa: I can relate to that.
Maddy: Because people just, they don't employ you or don't treat you the same a lot of the time, and it's really hard. So I was exposed to a lot of awful ableist conversations behind the scenes and things, which in a way was good. I could be a little spy and be like, "Okay, this is what we don't want to happen, and things like that." So I did a bit of work as writing and script editing and more in the business side, but I really just wanted to work more with the disability community, honestly. And I was just looking for ways that I could interact with the community that has pretty much been a lifeline for me and be able to help and contribute in a way.
And when I saw Nick had announced that he had this idea about Spoony, I was there for the idea drop and I was like, "Hello, this is exactly what we've been looking for for all these years." So I was a supporter from the start, and then it was a little bit later that I got the opportunity to work with you guys. And I've basically just been... I've fallen in love with Spoony and it's amazing to work within such a supportive team.
Larissa: Absolutely.
Maddy: And people who understand exactly what it's like to live with chronic illness and just all the fun that comes with that.
Larissa: For sure. And for people who don't know, this is our first time meeting in person. We've been vibing on... What do we use? Google Meet and Slack for ages. Maddy covered for me when I was on a holiday, and then I was like to Nick, I was like, "I want to work with Maddy more often." You just did such an amazing job and I'm so excited to work with you for this year.
Maddy: I was just following your lead.
Larissa: Yeah. I'm just so excited to work with you and I just feel like we're going to be a bit of a dream team this year.
Maddy: I think so. I'm so excited to work with you too. And it feels like honestly, a wonderful dream to be meeting you and being able to record this podcast. So I'm excited. This year is going to be a big year for Spoony.
Larissa: Yeah. We've got so many exciting things in the works for Spoony this year. We can't share all of it. But I suppose that's probably a good spot to wrap up. That's all we have for you guys today. We thank you all for listening, especially for our first episode.
Maddy: Thank you so much, everyone.
Larissa: Yeah. Sorry if we're a bit nervous or a bit excited. We will catch you on our next episode though. It's not just always going to be Maddy and I. We're chatting to a range of people from our community, from people who have lived experience advocates, even people who have started businesses from their lived experience. So many more people.
Maddy: We've got such an exciting lineup and we just can't wait to share it with you.
Larissa: Yeah, I'm so excited. And if you did like this episode, feel free to follow us on your favourite podcast platform or if you'd like to watch us, you can also subscribe on YouTube and also keep in touch with us on socials and of course the Spoony app, which is available on App Store and Google Play.
Maddy: Thank you for listening.