Pill Pop Transcript for Episode 5 – You Better Work

Izzie Austin: Pill Pop. A road trip for the chronically ill …

Silvi Vann-Wall: [whispering] It’s also a podcast.

Silvi: Pill Pop acknowledges the Traditional Owners of the lands on which we record, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders, past and present. Sovereignty was never ceded.

Izzie: We’d also like to give a content warning: this podcast contains detailed discus-sions of illness both physical and mental, and while we take a funny tone, this con-tent may distress some listeners. In Australia, Lifeline is free to call on 13 11 14, and we’ll have a list of local & international support services on our website, wheeler-centre.com/pillpop.

Izzie: Right-o – off we pop!

Silvi: I see what you did there.

[SFX: theme music]

Both: Last time!

Alex McFadden: I sometimes hide my good days, or hide my bad days, so that people only get like the moderate in between them and so they can't really judge against them.

Both: Coming up! Jacinta Parsons: We've got inbuilt in us this sense of honesty and work. And when you're not able to do it, there is a skepticism around you as a person. You know, what are you trying to pull?

[SFX: Theme music fades under]

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[SFX: highway sounds, car engine, hand brake crunching]

Izzie: Bom bom bom … de-bom-bom …

Izzie: So did you get time off work for this?

Silvi: Ummmm … not exactly …

Izzie: Okay. So you’re just calling in sick every day for the last, uh …

Silvi: Months?

Izzie: Several months.

Silvi: So, the thing is, because everyone’s working from home now anyway because of the pandemic, they kinda just think I’m working at home.

Izzie: Ah.

Silvi: Yeah.

Izzie: Hope they don’t listen to this podcast, it would give the game away something fierce.

Silvi: That is true.

Izzie: Mmmmmm …

Silvi: That is true.

[SFX: laughter]

Silvi: Don’t you think it’s strange that employers are just now realising they can im-plement work from home policies? When chronically ill people have been advocating for exactly that for so, so long?

Izzie: Right? Like, turns out this has been possible the whole time and employers were just like ‘Ah, we don’t wanna.’

Silvi: Yeah.

Izzie: Yeah.

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Silvi: Yeah. Funny about that.

Izzie: ‘Ah we can’t do that, coz of, um….’

Silvi: And they just walk away. [Laughter]

Izzie: They just stare at you until you leave their office.

Silvi: Yeah [laughs]. I dunno what the concern is. I feel like there’s always a concern that like, oh you know, the employer will be taken advantage of by the employee, and they’ll lose profit because of that. When so often, we know, from evidence, from case studies, it’s mostly the other way around.

Izzie: Yeah.

Silvi: I feel like no-one denies that, so what’s the big deal?

Izzie: Right? Like, as long as you’re submitting what you need to submit, there’s ac-tually no reason for you to be in an office for a prescribed amount of time.

Silvi: Yeah.

Izzie: Like, there’s really no need for that.

Silvi: Yeah.

[SOUNDSCAPE]

[SFX: Rickety roller coaster, children laughing and screaming, wild breeze, jaunty gentle carnival music]

Jacinta: Alright, so I'm going to put you on a roller coaster. You’re sitting beside me and you know. Things seem okay. Alright.

[SFX: music is now off-key, gears-turning sound as the roller-coaster cart goes up the ascent]

Jacinta: And as the roller coaster makes its way slowly up your first ascent …

[SFX: sound of loose gears, discordant grinding, this no longer sounds normal, it sounds like something’s coming loose]

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Jacinta: … you start getting those really uncomfortable feelings in your body. And then the moment where your whole system lurches, and there's a great deal of, I don't know, we'll call it pain in this experience, and there's a lot of screaming as we go down that first run.

[SFX: Music gets faster and faster, sounds of screaming and a roller coaster going around a track, static sound as the music cuts out.]

Jacinta: There's a lull for a moment until we start to rev up again, but the ride never ends. And in fact, it continues over and over and over again and just when you thought you could get off the roller coaster, no, you will keep going.

Jacinta: Hi, I'm Jacinta Parsons, I have Crohn's disease, and I'm currently working at the ABC. At the moment, I am the Afternoons presenter on 774.

[Music: LEE ROSEVERE - MORE ON THAT LATER]

Silvi: So, how do you normally explain Crohn's disease to people who have never heard of it before?

Jacinta: That is such a great question because I don't have a good answer. And af-ter 20 years or more, you would think I would write two lines so I could just say it, but I fumbled about it for about 20 years because I don’t even think I totally understood it myself for a long time. But I would say it's an inflammatory bowel disease. And it is – has got nothing to do with food that we eat, although they are finding out a little bit about that. And it's about an overactive immune system.

Silvi: Yeah, I pretty much say the same thing.

Jacinta: Have you got Crohns?

Silvi: I’ve got colitis.

Jacinta: Yeah I feel like I want to hug you right now. Little sisterhood!

Silvi: It is a bit like that, and I think...

Izzie: IBD pals!

Silvi: I think, yeah, you're the first person we've interviewed that has, like, the sister disease of colitis. Yeah. I haven't interviewed anyone with colitis or Crohn's yet.

Izzie: No one with diabetes either.

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Silvi: True. Yeah.

Jacinta: Cute.

Izzie: Nice.

Jacinta: Let’s find them!

Silvi: We’re collecting them all like, Pokémon.

Jacinta: That’s so cute.

Izzie: How have your employers in the past reacted when you've told them that you're chronically ill?

Jacinta: Well, that's the interesting thing I think about chronic illness, is the capacity or the propensity for us to actually divulge illness – because I think, and I don't know how you guys feel, but I know that people that I've spoken to who have chronic ill-ness, I think sharing that is a really vulnerable thing to do in a workplace. And often, if you found yourself back to work, which I did, I guess, after I'd been really, really sick for a long time, I was really frightened that employers would think that I was a risk, and that they would maybe not say it out loud, but possibly not give me oppor-tunities or, and these weren't necessarily scenarios that I tested out. But I often and again, this is something that I found a lot of people have the experience of, when you've got a chronic illness, you kind of keep it under your hat, you put up with a lot of the symptoms. Because if you … if you want to work, you kind of have to find a way to do it with the illness symptoms. So for a long time, I haven't really shared it explicitly with employers. I've written about it so they know, but and when you go to hospital or things happen that kind of you can't avoid sharing it. I found that a really vulnerable kind of situation to be put in.

Silvi: Yeah, I was just gonna say I read your great article about illness morphing you without your consent, and I related 100% to that, was that the first time that you'd written about it?

Jacinta: Yeah, it's actually interesting because I probably was diagnosed 20 plus years ago. And I think it takes a little while for you to really digest the complexity and the layers of what it actually really means in all the facets that this podcast is explor-ing all the different ways. But it was very – it was really beautiful to put words to something that I have felt at such a deep level. And then when I shared it, that there is this incredible through line with chronic illness that so many people have shared experiences, for the very fact of chronic, the fact that there is the chronic aspect to it,

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I think is a fascinating connection that we all have and that was what sort of came out of that article was – a sense of connection.

Izzie: Have co-workers reacted to it, or like do they comprehend it pretty well?

Jacinta: I think that's also really hard. You feel very alone with some experiences, because I think, especially with illnesses that are sort of known, you'll have people say, ‘Oh, yeah, my Auntie's got it, and she's like, totally off meat, and now she's real-ly great, and why don't you do that?’ So a lot of that happens. And that's not neces-sarily a work thing. But I did find an interesting discrimination that was very well in-tended, but it was kind of this idea of colleagues or bosses, wanting to minimize the amount of work that I did for fear that it would make me unwell because I was unwell at the time. And I felt like I lost my autonomy to make those choices myself. I – I'm sick, so I'm working. I'm making a choice to be here being sick. I'd felt like I lost the capacity to actually have a choice myself, and I found that a really interesting thing to combat.

Silvi: You said you were diagnosed 20 years ago.

Jacinta: Yeah.

Silvi: Or roundabout? Did that diagnosis immediately affect your working life? Or did it sort of take some time to, progressively impact on things like working?

Jacinta: I guess because I was in my early twenties in my retirement – I did my re-tirement early, so not going to ever be able to retire. No, so I wasn't really in full time employment then, but I couldn't really have worked at that time, I was so sick. So I was trying to go to uni. I had to do casual work and whatever I could. And that's an-other part of it, I think, as well is the ability to keep a full time job when you're with illness is really difficult. And I felt that because I haven't been able to … especially for it was probably about a decade of really bad illness and really bad experiences of it. Because I couldn't hold a full time job then the ongoing impact of that, like I haven't been able to save money necessarily or, you know, you don't have the same oppor-tunities as potentially your – your peers in terms of progressing in the same way. And I find that I found that a really challenging thing to think about in terms of career and life, you know.

Izzie: And especially when you consider that chronic illness just gives you more things that you have to spend money on. If you can't work as much, and all of your money is going to your illness, you can't save as much and it just kind of spirals.

Jacinta: I know. That's so true. I remember, I had friends who were working in jobs where they got car allowances and all that sort of stuff. And I was like, ‘I need a car

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allowance! Why do you have one? You've got money now.’ You know, that sort of thing, I think is a really, really big deal. You know that threshold you hit with Medicare where you don't have to pay anything anymore because you've had to spend so much money. That is like I said, the balloons come out of the ceiling at this point be-cause this is immensely exciting, but I think that's also part of it too though, where we live in Australia. Because you feel so vulnerable, because you cannot necessarily work to survive, the gratitude that you feel for public health, and for things like Medicare and for, for me at the time, I was on the Disability Support Pension for some time as well. So, you know, there is that real kind of duality around feelings about how hard it is.

Izzie: We live in a society that really, like puts all of the emphasis on what you do for a living and like your worth is so much about like, your capacity to produce work, to like labor under capitalism.

Jacinta: It is so true. And okay, so if you get work right, and you are doing something that actually meets where you are, then it's a beautiful identity, you know, but it's very hard when you can't fulfill that. And then on the other side, you know? But it’s very hard, if you can’t fulfill that. And I've been thinking about it a lot lately to this whole idea of ‘an honest day's pay for an honest day's work’ you know? This whole kind of, we've got inbuilt in us this sense of honesty and work. And when you're not able to do it, there is a skepticism around you as a person. ‘What are you, you know, what are you trying to pull?’ – And especially with invisible illness where you can't sort of show your disability or your illness, it's very hard to convince people around you as to why can't work sometimes and always having to explain yourself, and that is very demoralising and demeaning I think for your identity, when you’re talking about all that sort of stuff. When you say, ‘What do you do?’ And when you say ,‘I do ahh, sick? You know, I do nothing.’ Yeah. That is the fastest way to stop a conversation at a party. You know. And I think you're absolutely right, where identity is fused with work. And then when you're taken away from that ability to perform in that way, I think it's, it's huge. And it's something that I think often we have to really grapple with. And for me, it was sort of getting to the center of it as well and finding out well, ‘If I don't have that, and I can't do it, who am I?’ And in some ways those questions can be really, really beneficial for you the way that you live, but certainly not an ex-cuse to sort of have to say, it's a great little, you know, enlightenment thing to go through. You know, I wish we were far more agile in the way we think about our utili-ty.

Silvi: For sure, because this comes up a lot in all of our conversations … there's al-ways something about how when you tell someone you're ill and they're not familiar with the reality of chronic illness, they sort of have this idea that maybe you're just lying in bed all day, because that's nice.

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Izzie: ‘Oh, gee, I'd love to take some time off.’

Silvi: Yeah, they think it's a holiday. And, yes, it’s just not …

Jacinta: It’s so true. And I think I've been thinking about this too, this idea of when you're young and you say, I'm sick, there was always a skepticism. Right? Are you really? What's up? We are skeptical about illness. We feel the burden of proof rests with the one that is sick to prove that they are. And it's always aligned with skiving off.

Izzie: Yeah.

Jacinta: Or getting out of something, is that your sick. We never really believe the veracity of that claim. And again, I think we internalise that as sick people. I think you feel like you are a bit of a, you know? I know I questioned myself and it took doctors to have to say, ‘Mate you are really sick.’ And I'm like, ‘Am I? Can I?’ You know, I felt like I really needed to be validated because there's so much around you that pushes that and makes you feel like you're not really sick as you say you are.

Izzie: Yeah, like, I’ve had an identified fatigue issue for like, since I was a kid,15 years at this point. And only recently, like, I'm only just being referred on to special-ists, I finally have a doctor who's like, ‘Oh, yeah, this… this probably sucks for you.’ And I'm like that they didn't start with the whole, ‘Hmm. Have you considered that you’re faking it?’

Jacinta: Horrific – and that period, an extended period of diagnosis before you were diagnosed, it builds in you exactly what you described – this idea that well, maybe you don't have anything maybe in your mind, and especially women, I think come across that a lot too.Izzie: Hmm and it really built up inside me, like, the first appointment I had with this doctor, I actually just started crying immediately because I just … I assumed I would be dismissed.Silvi: Yeah… Izzie: But like no, he took me seriously!Silvi: … it’s overwhelming to be believed… Izzie: I’m like oh my god, thank you!Silvi: … and to be treated like a human

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Jacinta: And isn't it interesting too, when you've got a name for your illness? And hopefully you will have one too well, as well – it's limiting and it's also expansive. Yes. You know, it also limits you down to the things where people think they know what it is, and everybody's different. But it also can give you something that says, hey, this is just what's happening to me – a shorthand. And have to go into all the explanation of what I am. And at work that can be really challenging, I think, if we're kind of focusing on that, because you kind of need a shorthand, in a workplace that's professional, we don't want to divulge your personal life in a way to ensure that the employer believes you, just I want to be able to tell you really quickly and easily – ‘This is what's going on, and I just need you and I need us to work out a way that we can manage it.’

Silvi: And going back to the workplace, have your workplaces done things to ac-commodate your illness and has it always been as useful as they think it's going to be?

Jacinta: That's so interesting. I 've worked in really wonderful places,100%. I really haven't given them much opportunity to be supportive because I've been so fright-ened to talk about it.

Silvi: Yeah.

Jacinta: But I believe they absolutely would. I do think about this, again, a lot, and I’ve heard a lot of stories around … I think we don't know how to do it very well, be-cause I think what we still are very much stuck in, is, very traditional ideas of work. It's around hours, equal money, you know? When really at the end of the day work needs to be thought about differently because I think for chronically ill people, hours that string together in one consecutive block can be very difficult. Silvi: Yeah. Jacinta: And I think we start seeing a little bit of lateral thinking around work, but we are so embedded in this idea of: ‘You sit there for eight hours. I don't really care what you know what you're doing, but you must sit there for eight hours or you must lift those bricks for eight hours, and I'll give you money at the end of it.’ And if there's anything different to that, it feels like someone's getting shortchanged. But, we need to change the way we think about work, we’re needing to for whole range of reasons, but equity of access to work, which is what we’ve talked about in terms of the impor-tance of it for so many reasons, including personal identity, but also the economics of it. And workplaces need to not just sound like they are helping or wanting to be flexi-ble, but actually thinking about fundamentally how they can be much more agile

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when it comes to ensuring that people with chronic illness can be included in more workplaces.

Silvi: Yeah, those are great ideas. So what's your personal management plan like then? Because it sounds like you're pretty much doing it all yourself? Well, I guess with the support of GPs and specialists as well… What's – what's necessary for you to keep working?

Jacinta: I don't think it's a good plan. But at the moment, I'm actually feeling proba-bly better health than I have for a while, so it's I'm saying this in that kind of frame. But prior to that, when I was really sick at work, I would push through. And I would get to the weekend, and I would lie in bed for two days. And I would or I'd go home and go straight to bed. Because I felt such a compulsion to keep up at work in the way that everybody else was. So my management plan is not recommended. I think that my management plan is about how we've done it in the past and how we need to change it. And my management plan is about hiding, and about ‘doing’ because I didn't want to get left behind because I wanted a career.

Izzie: Yeah.

Jacinta: I didn't want illness to be my identity. I wanted the things that I had missed out on for a really long period of time. And I pretty much wasn't prepared to let any of it not happen.

Silvi: Yeah, yeah, I've had colitis for 10 years now. And I found it's almost necessary to be just a bit cavalier with it and just go, ‘Well screw it.’ Like, everyone's expecting me to be a part of the world in the way that everyone else is, you know, everyone else is out there, slogging it doing nine to five, so I should be able to do that too. Like, there's no reason I shouldn't be able to and then, you know, kind of putting, you know, the illness in the backseat trying to forget about it. And then of course – Jacinta: – it rears its ugly head. Silvi: Yes! [laughs]

Izzie: And it doesn't help that every now and then something will pop up in your feed about how competitive the workplace is and how it 's more competitive than ever be-fore and it's all just the increasing casualisation of the workplace. When I started my PhD, every single person said to me, ‘So you know, the, uh, the job market is really competitive, right?’ And I'm like, ‘Hahaha, yep. Cool. Thanks. That doesn't terrify me to my soul at all.’

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Jacinta: I know. Yeah. We've taken the human out of the workplace I think, too much, I think we've increasingly done that. I think it's fed into a lot of things. And I think we've done it slowly but surely. There is an expectation, as you said before, around utility, as opposed to humanity. And I think, I think we miss efficiency. I think we miss a lot of things when we think about it like that. And I think we need to change but I don't know how that will happen.

Silvi: Do you ever feel like your good days might be used against you?

Jacinta: I think one of the hardest states to be in with chronic illness is the gray state. I was really good at being sick, where I was bedridden for weeks and weeks and months, because I was able to find a way through that. It was very painful, but it was a part of a process. I'm really good at being well, and I know how to do that. That's pretty simple. But sitting in between those two states where you fluctuate be-tween them, and you have no static sense of who you are in them is so complex. Of-ten you would stop talking about it, because it's so complex to explain, ‘Oh, I’m hav-ing a good day. I'm having a bad day.’ People don't have a capacity to hold those no-tions for a long period of time. You can do sickness, if you've got, you know – some-thing that will have a beginning and an end – people are all about that, they are ready for it. But when you say, ‘This will go on indefinitely, it might fluctuate’ – it is so hard for people to imagine how they might be able to be part of that, because it re-quires so much.

Izzie: And on that, does your illness ever inform your work in a positive way?

Jacinta: Hugely. Everything I do now is as a result of my illness, before I got really sick, I was on a completely different path. And because I got so sick, and I lost every-thing I, you know, I had to move, I couldn't pay rent, I didn't have a job. I just was forced to reevaluate my entire life. And so it gave me this wonderful opportunity to start from scratch, because everything was gone. And when you're faced with illness, and you know, sometimes it can be a very profound experience of losing identity, all the stuff you go through. So a really good opportunity just to sort of go, ‘What, what do I want to do?’ And then realising that what you want to do is actually about a whole lot of small steps, not about these big ones, and just going about it that way. So illness has been everything. It's also my empathy. It's my connection to myself in a lot of ways because it stops and it makes me think – I would never choose not to have this experience.

Silvi: How do you feel about the question that often comes up in job interviews where they say, ‘Is there anything that might preclude you from, you know, doing this job?’ And you sort of feel like, well, maybe this is where I disclose my illness. But does that mean they can then discriminate against me like in a sort of loophole way

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when they're legally not allowed to do that but they've asked you a question. And then they could just say it was something else that made them say no to you.

Jacinta: My answer is probably, you know, not the right answer, but I don't trust em-ployers. I trust my employer, PS. – if you're listening to this, my employer is wonder-ful – but I do not trust. I do not trust that I am ever seen as the human that I am. I don't. I feel and I think that I hope I'm wrong. But I don't think I would disclose that and I don't think I'm legally obliged to either and I think that that protection is a really important one. Because I don't think that we have enough depth of understanding about what illnesses in the illness community, let alone taking it out into a main-stream world that just see you as a risk. And I wish that wasn't true! And I hope it's not. And I hope there's a lot of other examples where people will say that's not the case. Yeah. But yeah, at this point in the way that we see the world, I don't feel, I don't feel confident to. I wouldn't be out and out until I really understood what that employer’s values were and how they how they dealt with things.

Silvi: Yep. Yeah, I'm totally on board with that. I used to never disclose it until I worked for a certain fast food franchise, and I didn't say anything. And then a few months into the job, I had a colitis flare up. And I was actually pulled aside and they said, ‘Well, we did ask you at the start of this job, whether there was anything that would preclude you from you know, working normal hours, and you didn't tell us about this. So what's going on?’ And I had to basically had to scramble and like come up with excuses like, ‘Oh, I didn't know that's what it was for.’

Jacinta: No! You poor thing. ‘Preclusion is your inability, employer, to actually find a way to support me to work when I have an illness flare.’

Silvi: It was pretty horrible.

Jacinta: And what happened after that?

Silvi: Well, I told them that I was on some drugs to help me, it was steroids at the time. And, but his response to that was, ‘Oh is that the good stuff?’ and winked at me.

Jacinta: Are we able to take that person somewhere like a court?

Silvi: I'd love to

Jacinta: That’s horrific, I’ve got to say.

Izzie: Like the Thunderdome.

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Silvi: And since then, I've been like, ‘Oh, God, maybe I should say something’, and then just hope that … you know, I mean, I thought about it this way. Like if I do dis-close it, and the employer says, ‘No thanks’, then they’re not an employer I want to work for anyway. Because if they can't handle the fact that I have a chronic illness, then yeah, I don't want to have that sort of tension everyday coming in thinking, ‘Oh, my god, they're gonna fire me just because I’m sick.’

Jacinta: So unfair, though, isn't it? Because the responsibility should be on them to ensure that they have good policies and processes in place.

Izzie: And like, even employees without chronic illnesses, like, people get sick, peo-ple get dramatically sick, people get sick for a long time.

Silvi: It can happen at any time.Izzie: Like, it's just a thing that happens.

Silvi: Yes. So – I saw that you’re a Crohn's and colitis ambassador, tell me about that. Why did you decide to become one and what does that involve?

Jacinta: Pretty much it involves just, you know, having a little speech here and there and being part of some of their programs that they do, some of the fundraising I sup-pose. And just being a voice – being prepared to go and talk about it wherever I can to extend the understanding of it. That it's really nuanced, and everyone has a really different experience with it. And all sorts of really important understandings, so many people have IBD. And we don't talk about it enough, because there's a lot of shame associated with it. And so I just feel really proud of it. And I feel really proud to talk about my experiences with it and make sure that, you know, I’m another voice that's done that. I know when I was when I first got diagnosed, there was a musician by the name of Beth Orton who, she has Crohn's disease, and there was something little that came out about it. And I remember just looking at her and thinking, ‘Ah, if you've got it, okay, that's all right.’ You know, and I just think it's really important. I actually got a chance to meet her, it was like 15 years after that, finding out about it. And I told her, it was such a beautiful moment for her to realise that there was someone on the other side of the world that took a lot out of knowing that she had the same dis-ease as I have, you know, I think it's important that we are out and proud and can talk about it – and talk about the complexities of it as much as anything.

Silvi: Yeah, for sure. Those connections are really, really important. Yeah. Because it's one thing to maybe talk to strangers on the Internet about it, but yeah, it is differ-ent to actually like, know someone that you can talk to one on one and yeah, just have that conversation about your illness and how it's been affecting you.

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Jacinta: And where you go, ‘Oh, my God, that's the same as me!’ Or whatever. You know, like, it's because it's very hard to understand the depth and the layers of the experience.

Silvi: And the Crohn's and Colitis Association – are they mainly focused on raising awareness of the condition?

Jacinta: Yeah. And they are advocate as well – awareness and advocacy to gov-ernments. I know that there was campaigns to kind of help with some of the systems and how stuff works in hospitals. So they're kind of they're – they're treading the pavement as well and in trying to get some significant changes to the way things are processed, etc.

Silvi: Great. And one final question – Jacinta, when did you realise that your illness would be with you forever?

Jacinta: That is a great question, because I think I'm still realising it. I think chronic is one of the hardest concepts to really, really understand because I've said this a bit when I've talked about or written it, chronic when I was little, was like – when I was 20 was like, ‘Yeah, cool. I get that. It's just like a couple of years,’ you know? There's no sense that – then you go through all the different iterations of it, and you go through so many different experiences with it. And each time you're like, ‘Oh my goodness, this thing is actually not going to ever go away.’ So I think it's evolving and I think it's one of the crucial aspects of chronic illness is getting that, and I don't know exactly when that happens. I don't think I still have.

[MUSIC: UPBEAT STING]

Silvi: Well, thank you very much Jacinta for joining us today.

Jacinta: What a delight, it was delightful. Thank you very much for having me.

[MUSIC: THOUGHTFUL STING]

Izzie: So, would you sue your former employer?

Silvi: The one that asked me about the drugs and whether they were ‘the good stuff’?

Izzie: Yeah that one.

Silvi: Um… ah look, I’d love to get some sort of justice, but at the same time, I know that it would be quite difficult to prove that that happened.

Izzie: Mm.

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Silvi: I didn’t have any recordings happening, there was nothing written down, so I do worry that if I get into that situation, um, where I’m trying to take legal action, I will not have the upper hand in any way. And it’s gonna cost me a lot of time, and a lot of money, and it may not amount to much, if anything. You know?

Izzie: Yeah.

Silvi: So, it’s one of those situations where it’s like, I dream of justice!

Izzie: [laughs] Yeah!

Silvi: Whether that will ever happen, I dunno. And it was so many years ago now.

Izzie: Yeah.

Silvi: Um, I kinda … I kinda don’t care enough.

Izzie: Yeah.

Silvi: Like, I hate that that happened to the version of me that I was then, but I also know now that, y’know… it’s taught me something important.

Izzie: Mm.

Silvi: And I’m better at advocating for myself.

Izzie: Yeah, and you can like, take from that what you can and learn from it.

Silvi: Exactly. But at the same time, if that guy happened to wake up one morning and his testes had shriveled up inside his body… I wouldn’t weep for him. [Laughter]

Izzie: Well, personally I’d like to sue your former employer because their burgers aren’t very good and their chip seasoning has way too much oregano in it.

Silvi: [feigned shock] Ohhhh!

Izzie: Ohhhhh!

[OUTRO MUSIC: Dip Dop]

[SFX: Fade under]

Izzie: Next time!

Hayden Moon: If you’re not a cisgender heterosexual white person who doesn’t have a disability, then it’s just not going to support you.

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Silvi: We talk to Hayden Moon about doctors and navigating medical bias.

[SFX: outro music]

Izzie: Pill Pop is hosted and produced by me Izzie Austin.

Silvi: And me, Silvi Vann-Wall.

Izzie: And it’s produced in partnership with the Wheeler Centre as part of their Signal Boost programme. You can find more episodes on wheelercentre.com/pillpop.

Silvi: You can find us on Twitter @PillPopcast

Izzie: Editing by Silvi Vann-Wall.

Silvi: With production support and mentorship by Bec Fary.

Izzie: This podcast is recorded at Studio 757 at the University of Melbourne.

Silvi: Music & sound effects are sourced from Audio Network, Lee Rosevear, Soundsnap & Incompetech.

Izzie: And if you haven’t already, don’t forget to subscribe and leave a review!

Silvi: Pill Pop is a podcast about chronic illness. We’re not doctors, and no part of our series is intended to be taken as medical advice. If you think something might be up, try to find a doctor you trust. It’s a hard journey … but you’re not alone. If anything we talked about today brought up distressing feelings for you, remember that Lifeline is free to call from anywhere in Australia on 13 11 14.

Izzie: And we’ve got a list of support services on our website, wheelercentre.com/pillpop.

[SFX: Ambulance honking like a truck and driving by]

[Musical sting]

[OUTTAKE]

Jacinta: Horrific – and that period of diagnosis which can be so extended for a lot of people … can you not hit the microphone, please? [laughter] I’ll start that sentence again.

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—

Visit wheelercentre.com/pillpop to listen to this episode – or for more informa-tion, including support services. Pill Pop is produced, hosted and edited by Silvi Vann-Wall (she/her) and Izzie Austin (they/them) in partnership with the Wheeler Centre's Signal Boost programme.

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