Sick, I Swear

Living Life Unbalanced with Cerys Davage

• Kaitlyn Rohde • Season 2 • Episode 2

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Cerys Davage, Host of Unbalanced Podcast joins SIS to talk about LGMD, disability, podcast life, advocacy, and how to chase creative dreams without burning yourself out...and YA, I love her.

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Meet Karis And LGMD Basics

SPEAKER_02

Welcome to another episode of Sick Eyeswear. I'm your host, Caitlin Roadie, and today I am joined by Karis David. She also has a podcast. It is called Unbalanced. So good to have you here. Nice to finally meet you.

SPEAKER_00

Hello. So nice to meet you. Yeah, we've been speaking online for a while, and I'm so glad this is finally happening now. So thank you so much for asking me to come on.

SPEAKER_02

And I can listen to your ex in all goddamn day. So I'm super excited about this. I'm glad someone can. Yeah, that's good. Okay, so we have a lot to talk about. Um, let's start with who you are, your journey, your diagnoses, what you're all about, because I I have different diagnosis than what you do, and I'm here to learn about them as well. I mean, I've learned about them through your content and stuff, but let's get into what you're all about.

Diagnosis Journey And Early Symptoms

SPEAKER_00

Hi guys, I'm Karis. I'm 24 years old and I live in Cardiff in South Wales. Um, so I have limb girdle muscular dystrophy type two eye, which is a bit of a mouthful, so we call it LGMD for short. And I was diagnosed with that kind of by accident when I was seven years old. So I was going through a diagnosis of celiac disease when I was seven, and I've had celiac disease since I was born, but that's been a whole journey in itself, just yeah, getting misdiagnosed and just not realizing that it was something as simple as celiac disease. Um, so I was going through a diagnosis for that at seven, and during my blood tests, they realized that there was something else wrong with me, and my CK levels in my muscles were really high. Um, and it was like dangerously high to the point where it's usually only if you have a muscle disease like me, or if your muscles have suffered something really traumatic, like a stroke or a car crash or something. So they were kind of panicking and they thought my liver was failing, so I had to have a biopsy on my liver, but then everything was fine. And then eventually, through genetic testing, they came to find that I have LGMD. So that's kind of where it began, but I didn't really know much about it because it wasn't affecting me then. So it's a progressive condition, it's degenerative, so it gets worse as you get older, and I have an onset where it kind of starts to affect you in your teens. So I was about 12 when I had my first symptoms, and I was always a bit slow in class. I just was always the last person to finish the race in sports days, and I just couldn't really keep up with my peers. Um, but then I kind of knew I had something going on, like some kind of muscle condition. I was just too young to really understand it. Um, but I was going to regular physio every year, and they always said I was doing absolutely fine, so I had nothing to worry about, but it wasn't until I was in high school, so from ages 12 to 18, that I really struggled and started to learn about my condition through my own experiences a bit more. Um, so I started to struggle a lot with stairs and being open about my condition as well. You know, I only really told like a couple of really close friends and they didn't understand it because why would they? I didn't even understand it. Um, I did just didn't really have that representation of other young disabled people my age. So it was quite a tough time for me. Um, I have two younger sisters and they both have it as well. Since I had my diagnosis, they got theirs as well. And it's quite rare, so our parents are both carriers of that gene, um, and they both kind of passed it down to us, so they're not affected, and it doesn't run in the family, it's just chance that we happen to get both bad genes, I guess. Um, so yeah, and then I guess we'll get on to my podcast in a bit, but it was because I wanted to be the voice that I wish I had when I was younger that I started Unbalanced my podcast.

SPEAKER_02

So three

Sisters, Genetics, And R9 Subtype

SPEAKER_02

of you have it. So you kind of when did your sisters get diagnosed with it?

SPEAKER_00

So are you the oldest? Um I'm the oldest, yeah. So my two younger sisters are 21 and 18. Um, and when I was uh diagnosed at seven, they pretty much went straight to test the rest of my family. And even though my sisters weren't affected, and they're still not as affected as I am now, um, I guess because I'm the oldest, I guess it's something that we'll just continue to adapt to as we get older and get to know as we grow.

SPEAKER_02

So you get to grow through it with them. I mean, at least you have your sisters to go through it with, and I mean, obviously the community now that we know exists. So with muscular dystrophy, there's a lot of different kinds.

SPEAKER_00

Yes, there's loads of different kinds of muscular dystrophy, and there's actually a lot of different subtypes of lim good or muscular dystrophy, so you've got so many different types. I've got two I or what's now known as R9, which is quite confusing, but R basically means recessive because you have a dominant and recessive gene, and nine is just the latter I, so the ninth letter in the alphabet. That's pretty much what it is. Um, because I think they ran out of letters and you can't run out of numbers, so they just decided to switch it. Um, so I have a recessive type of LGMD, but there's actually, yeah, loads of different types, which I've only recently found out in the past few years since being open to this community.

Why She Created Unbalanced

SPEAKER_02

Okay, so on to your podcast, Unbalanced. The name came from balancing disability in your 20s. Is that right?

SPEAKER_00

Yeah, kind of. I mean, it has different layers to it. So I think there's something for everyone in my podcast. Obviously, it primarily talks about my life with a disability, but I interview lots of other people with different chronic illnesses, mental health, or just any kind of life barrier, and how they still manage to live their lives and live their best lives with this life barrier. So, you know, you can have a balance between work and life balance. You have, you know, mental health balance, everyone's a little bit unbalanced, I'd say. And also it's quite a funny inside joke for me because I have a disability that means that I fall a lot. So I'm physically unbalanced as well. Clever. Thank you. Disability humour, there's nothing like it. No, you need to have to laugh at yourself. You do, it's one of the only ways through. Like, it's definitely a big treatment. It's a symptom that I've had since I was quite young. Like through school, I was having the falls quite a lot. And with my friends, like we'd just they'd just be like, Oh, Keras fell again. And you know, I'd make another hole in another pair of trousers. Um, and you know, I'd call it a weak leg with my family and friends because I didn't really understand it. It just literally meant that my knees would give way and I'd just fall randomly. Like I wouldn't know that it's gonna happen. It's just out of nowhere. So I've often had the comparison to falling either collapsing like a deck

Disability Humor And Falling Stories

SPEAKER_00

chair or falling like a sack of potatoes. So there we go. Gotta laugh or you'll cry.

SPEAKER_02

Literally. You just celebrated two years of your podcast. How has it been going?

SPEAKER_00

Yes, I'm honestly just so grateful for the community, not only the community I've built from it, but how b how much uh I don't know, like the sense of belonging that I feel from it, because when I started the podcast, I didn't really know that many people with the same condition as me, let alone the whole massive community that's out there that I know of now. And it wasn't until just over a year ago that I started posting about it on Instagram. Um, and since my podcast has, you know, been growing over the past two years, and since I've managed to meet so many amazing people, both on and off my podcast, I've just my eyes have just been open to how big the disability community really is. And there's truly a place for everyone, and it's just been so rewarding knowing that my podcast is like a voice to someone else's life and their experiences, and it's nice for me to know that I'm not the only one. I'm not yapping about something that no one can relate to. You know, so many people can relate to it, and that's just my goal is to make someone feel less alone in their experiences, like I did growing up. And now I know that there's so many of us, and yeah, it's just been amazing. And I've had so many incredible opportunities come from it.

SPEAKER_02

And that goes to show like turning your pain and your struggles into purpose and having a bigger outlook on it rather than just like spiraling and drowning in your disability. You're able to speak on it and spread word and create community. I think that that has been a major savior for a lot of us, especially now that we're starting to speak out more. There's a lot more people that are willing to share what they go through, and the more voices, the better. Okay, what was like one of your biggest struggles starting your podcast? For like selfishly for me, for me to know.

SPEAKER_00

Okay, starting the podcast. Um, I was kind of lucky with my background in working in radio and interviewing people, but I guess I wasn't as technical. My strong point is the talking, the interviewing people, the recording it by myself. But it it would, I've learned a lot starting my podcast just on the technical side. I'm a bit of a perfectionist, so that's been quite difficult to kind of battle my own head. Like, are other people really gonna notice this little, this tiny little mistake, or is it just me? And I think I've learnt to be a bit kind of on myself because I'm quite self-critical, and I want this podcast to be like the highest quality possible for me. Um, so I've definitely found it hard to not criticize myself as as much as I usually would. Um, so yeah, it's

Building Community And Belonging

SPEAKER_00

been it's been a journey for sure, but I've learned so much, and I think that's exactly what I struggle with too.

SPEAKER_02

I'm definitely a perfectionist, and when it doesn't look the way that I want it to, I'm like, uh nope, scratch it. And it's like, yeah, you you can't like part of being human is being imperfect too, and so not having the perfectionism on it and just giving yourself a little bit more grace. I find myself like I'm able to get conversations scheduled, I'm able to have the conversations, have guests, but like getting the episodes out and putting out the content is where I totally struggle, and yeah, that's obviously like a learning process, and we're working on it, but that's that's been my big struggle.

SPEAKER_00

Yeah, that's another big thing as well. So my episodes are out every other week, and it's every other interview and solo episode, and it's crazy how quickly these couple weeks sneak up on us. Like, I've been trying so hard to kind of forward plan and to pre-schedule things, but sometimes you want to record closer to the time, and sometimes life just gets in the way, and you're like, oh, it's like three days until my next podcast episode, and I haven't finished editing it. Yeah, so I'm proud to say that I haven't missed a single week that an episode is supposed to go out, but they've been difficult. It's meant late nights, it's meant late publishings, um, it's meant a lot of stress, and a lot of other people in my life getting stressed for me.

SPEAKER_02

How does that affect your illness? Like, does that flare you more? Like the stress and like having to get things done, and how do you manage getting the content out, but like also giving yourself enough rest for energy and ability to not flare?

SPEAKER_00

Yeah, that's such a good question. I think it's all about balance when it comes to having a disability. Um, but I I do find fatigue to be a bit of an issue sometimes, but I my work is editing, so my main full-time job is editing, and then I come home, and then sometimes I have to spend

Podcast Growing Pains And Perfectionism

SPEAKER_00

the evening editing again, so that can be a bit tough. Um, but I I do enjoy it, otherwise, I would not probably do it. You have to enjoy something like this that's gonna be so time consuming. Um, but I do find editing as a nice way of just sitting down because I'm such a productive person. I'm constantly here, there, and everywhere, and I'm constantly finding things around the house to tidy or to sort or whatever. So editing or actually sitting down to record is a good way to just make myself stop and to only use my brain, and my brain isn't affected by this disability, only fatigue, I guess, sometimes. Um, but I do find it a nice way to wind down. It's just sometimes when you really don't feel like doing it, and then you really have to edit, otherwise, the episode won't be out in time. So I think it's about just moderating it in tiny chunks rather than doing like hours at a time, just to do a little bit here and there to not overdo it yourself and to not overwork yourself because uh looking at the screen for too long is still bad for you anyway. Oh my god, yeah.

SPEAKER_02

And with me too, I have really bad migraines, so like the screen time has to be limited anyway. So putting myself in an editing position for hours on end a day, like it just doesn't work for me. So I like I have to take that factor into account too, and that's obviously something that I'm figuring out. Um, and like with this, we're on our own timeline. Like you do every other week, like that's on you, like you've created that timeline, which is great. I think that that's what I'm gonna eventually try to get into. Um, but you have to you have to hold yourself reliable and accountable to to get this stuff out.

SPEAKER_00

Definitely. And because it's not my full-time job, which maybe in the future, who knows? Um, it's difficult to draw the line between like this being work and it sometimes being just like a hobby or a passion. And sometimes I should be going to bed and I'm still up editing, and I'm like, where do I just stop editing and start bedtime? Like, where do I draw the line? Yep. Do you get that? Like, it's just constantly on your mind.

SPEAKER_02

Yeah, it's like that there's like a mind-body disconnect too like where my mind like wants to do it. I know I need to get this and this and this done, and then my body's like, I literally can't. Like, I'm so fatigued.

SPEAKER_00

And yeah. I mean, I have a habit of just keep doing things until my body physically tells me that I can't do it anymore. Um, so that's something I need to work on, is just stop being so stubborn. Yes.

SPEAKER_02

Which what what's your whole other thing? When's your birthday? When were you born?

SPEAKER_00

Uh 17th of August. So I mean, I'm saying that I say that I'm 24, but I'm actually 23 right now. Well but I know by the time this episode comes out, it'll probably be I'll be 24, right? Yes, you can. So you know, I'm just I'm always thinking one step ahead. But yeah, my birthday's in seven days, six days. She's a Leo. I am yes. What are you?

SPEAKER_02

I'm a Pisces.

SPEAKER_00

Oh, I love oh, my best friends are Pisces. Ah, love that. I love Leos. Like they keep me like energized and going. But it's weird because two of my other friends are born one the day before me and one the day after me. So they're both Leos, but they are like the opposite from me. They're both like introverts, they both you know have their own different personalities that's just the opposite from mine. So it is it is quite interesting.

SPEAKER_02

Do you okay? So when you're talking about your stories and being vulnerable, do

Fatigue, Editing Routines, And Pacing

SPEAKER_02

you ever have like self-doubt of sharing too much or sharing their own thing or saying the wrong thing? How do you navigate that?

SPEAKER_00

Um, ooh, I've never been asked that question. I think I mean I try to think of a topic or do like a rough skeleton before I record every episode, but then when I interview people, I don't really know which kind of traject trajectory, I can't say that word, traje trajectory trajectory. I trajectory we know what you're saying. You know what I'm trying to say. You never know which path the conversation will will, you know, follow. So that's quite interesting, is kind of the spontaneity of it and letting the interviewee lead the conversation. But when I'm by myself, you know, you can get in your own head about things and you can just word vomit, and then I listen back to it when I'm editing, and I'm like, why did I say that? There's there's no need to be saying no one cares. And I think maybe I am still being self-critical, but I'm like, literally, no one cares. Then it's like, well, somebody's gotta relate. Exactly, yeah. So sometimes I'm like, is anyone gonna even get this? But then I get a message when the episode is out, like, oh girl, I completely related to you on today's episode. And I'm like, oh, okay, yeah, this is what it's all about. It's all good. Yep, somebody's not just me from it. Yep, yeah, exactly. And even if they can't relate to it, I hope it's educating as well, because it's not just for people with the exact same thing as me. It's for other disabled people, it's for non-disabled people who want to learn more or who want to educate themselves and just open their horizons a little bit more. So if it's not relatable, I just hope it's educating and not like what on earth is this girl rambling around about.

SPEAKER_02

I feel that. So obviously, talking about disability and chronic illnesses, like those are heavier topics. I mean, obviously, we try to make them as light as we can, but there is a sense, at least for me, I because I'm an empath, like I feel like secondhand traumatized for like their experiences and what they've had to go through, and gets me upset and frustrated that that was their journey, especially when it comes to like the medical gaslighting and not being taken seriously and stuff like that. Do you ever experience that where you kind of like really feel another person's story and it really kind of like shakes you up emotionally?

SPEAKER_00

Um, yeah, I mean, wow, yeah. I I guess I do, you know, when you listen to these stories and you you're you are engrossed in the stories, aren't you? And you're just like, wow, I just I can't believe life is just so unfair sometimes that you've gone through that. But I think it makes me grateful that these people feel that like they can open up on my podcast to me, I guess. Like that's a positive way of looking at it. But also like I feel like the more dramatic or emotional or impactful stories will have the most impact on the audience and will you know make them want to learn more or want to listen more. Um, yeah, but I I completely get you, you know, like you said, I'm an empath as well. I just really do feel for people when they're going through something. And then I come back from that episode or that recording. And I'm like, wow, okay. And then I immediately tell my boyfriend everything that's been going on. And then I guess I just get it stuck in my head for a while, just how resilient our community is and how strong, maybe not physically like me, but mentally how strong we are. Um, because we have, like I said, extra life barriers that other people don't have to deal with. So they just go through life without these barriers, and we have an extra layer of hardness in our life, and we still manage to live our lives and still find little things to be grateful for and to enjoy. Um,

Vulnerability, Relatability, And Impact

SPEAKER_00

and that's what my podcast is all about is trying to keep it, I guess, positive and yeah, shine a light on the negative experiences that people go through, but the outcome being how positive they can still make their life, if that makes sense.

SPEAKER_02

Totally. And it gives you like a sense of you're just like proud of everyone that has gone through all these experiences and deals with what they deal with, and they're still able to carry on in life with as positive of an outlook as you can have. Like, you're not gonna be positive all the time, but the underlying like positivity on the world in life, it it inspires you and it makes you want to keep going, and especially in this community.

SPEAKER_00

Yeah. I mean, I I get it listening to other podcasts as well. Like, I I listened to yours and I was like, wow, I'm just I love this girl so much, and like she has no idea.

SPEAKER_02

I know, but you I'm catching up on your episodes. I'm like, because you have quite a few more than I do at this point, but same thing. Like, I'm like, damn, people really do go through it, and it's so nice to have like the positive light shined on it. Okay, so going into content creation, being chronically ill, do you ever feel like you're living in like straight advocate mode? Like, is there a barrier between like real life reality, but then like also wanting to be an advocate for other people? If that makes sense.

SPEAKER_00

Um, wow, these are great questions. Um, I think I think in the real world, let's quote that, where I am kind of the only person in my day-to-day life with a disability that I know of. Um, I do feel like an advocate sometimes, just because how are other people meant to know about accessibility or about disabled people's needs or about the way disabled people look? Um, like I get approached a lot either because my disability is visible and my need turns in when I walk, and I kind of waddle a bit when I walk. So I've had people come up to me and ask me if I'm okay, and it's taken me some time for me to just be okay with telling them I have a disability, and usually they back off and look really embarrassed, which I love. But I also get the other side because my disability can be invisible as well, and I get people wondering why I'm parked in the handicapped spot, why I'm going to a disabled bathroom, and I have to explain to them that I have a disability on the other side as well that you just can't see. Um, so I do feel like I'm an advocate with every situation that I have. I feel like I'm educating

Advocate Mode In Daily Life

SPEAKER_00

just one extra person through life, but I feel like I don't know if it's because I'm used to it or I feel a pressure or what, but I don't have to be saying that to people. I can easily just be like, mind your own business. I could be a lot more rude.

SPEAKER_02

Yeah.

SPEAKER_00

But I do I find every situation like that, or someone who asks me questions about disabilities, even if they're just curious, like in a nice way, I just find them as opportunities to educate people and hopefully they can take that and not be in that situation again and not question someone else for their disability. Um, and in in the workplace, like I'm there are a couple of other disabled people, but in my immediate team, I'm the only one. So I have to, I you do have to advocate for yourself, and especially with a condition like mine, it's not very visible. And people people just don't know your what your needs are unless you vocalize them. And I think self-advocating is a form of self-care. Like you do look after yourself by saying, actually, we can't go to that pub because it's not accessible, rather than saying nothing and then struggling and dealing with the consequences later. I think advocating for yourself can be really difficult and it can maybe put you in awkward situations, but it'll benefit you in at the end, you know.

SPEAKER_02

See, that's what I love about having these conversations because a lot of the things that you just said is everything that I need to hear all the time, anyway, because I'm still learning how to be like the best advocate as well. And especially when it comes to the self-advocacy, like I will just go to a bar that's not accessible or push through it because I don't want to be like I feel as though it's a burden and it's not, it's just like reframing that of it is self-care to really take your needs into account before anything else. And so what you just said again, on repeat, probably for a while until I can just nail it into my damn brain.

SPEAKER_00

You're welcome. I just need to take my own advice a bit more, I think. It's easy. Uh I guess when you're in this situation, you don't want to be a burden, but I need to remind myself that it is all in my head. Like if I say something and I think like, oh, people are gonna think I'm a burden, they're if they actually do think you're a burden, they're horrible people that you should not be hanging out with anyway, right? Period. Yeah. So yeah, I guess, yeah, I need to take my own advice as well. But just push for what you need and what's best for you because you wouldn't want your friend to suffer. You wouldn't want your friend to stay silent and to suffer and you know, where you could have actually helped her. Right. Um, so yeah, try and treat yourself like you would your friend, I guess.

SPEAKER_02

And yes, treat yourself like you would a friend.

Self‑Advocacy As Self‑Care

SPEAKER_02

And again, like your friends won't know necessarily your needs if you don't vocalize them. Like eventually over time they'll understand and start to like get some of your needs, but how are they ever gonna know if you never tell them, you know? And I gotta remind myself that as well. So sharing your journey online, your podcast, how do you balance like the privacy of your life versus being like transparent and authentic of what's going on with your life? Because that's something that I'm I I wanna be as vulnerable and authentic and like transparent as possible, but I'm finding myself sometimes getting into like that being a little bit more tricky just because this is such a hard, complex thing to deal with in life.

SPEAKER_00

It is definitely, and I think social media is naturally a place where people post their best moments. Um, and if you have a chronic illness or if you're a chronic illness advocate, I guess I feel pressure to not just show that part of life. And sometimes if I if I'm having a good streak and I'm not having flare-ups or I'm not um like struggling as much like all week or whatever, and then that's all I post about online. I'm like, oh I owe my audience like a bad situation for them to relate to. So sometimes I do feel that a little bit, but I think as long as you're being authentic and you're not putting anything vulnerable out there that you wouldn't be comfortable sharing, like you have to be comfortable because social media is huge and whatever you post on there is out there forever. So you have to just be comfortable with what you're sharing. Um I do feel sometimes like do I share this? Is it like are people gonna think that I'm pitying or asking for pity? And that's another huge thing. But I guess if you try and keep it real and you're not complaining all the time, people will relate to you or just be grateful that you are being open and honest because everyone has down days, you know, whether you're disabled or not, you'll have a bad day sometimes. So as long as you share that with I think, yeah, just with a maybe a bit of humor, or like because that's just the way I do it, or not just constantly complaining about things because no one wants a downer like that. You have to just find an in-between where you're comfortable, and in in the way that you would post about it authentically, don't copy anyone else, you know. Right. You know yourself better than anyone.

SPEAKER_02

Totally. And there's so much similarity that we all experience, and a lot of our feed is disabled creators and disabled community and chronic illness, whatever, all of it. It's hard to be like, oh, they've already posted that, so I don't need to post it again, versus like sharing your own experience with it, even if it's similar, it just shows like how many shared experiences we do have.

SPEAKER_00

Yeah, we're all in the same boat, you know? Totally.

SPEAKER_02

Okay, so you were just at a okay, L G M D, right? That's right. Yeah, that's it. You were just at a conference in Florida.

SPEAKER_00

Was that your first time in the States? Um, no, it wasn't actually. Um, the first time I went to the States was just for Disney World. So I don't really count that

Privacy, Authenticity, And Social Media

SPEAKER_00

because that's just Disney. I don't really see America. But in 2022, I went to Iowa for the first, well, my first LGMD 2Y conference, and we did a little tour of different parts of America because I've got a lot of friends and family out there. Okay, and so that was cool. Um, but yeah, I've just come back from Florida for my first LGMD-wide conference, so all the different subtypes of LGMD. So it was like a much bigger conference than the Iowa one, and it was amazing.

SPEAKER_02

Did you learn a lot?

SPEAKER_00

Um, I think every con every conference is quite science-heavy, and it teaches you a lot about how the subtypes work and the genes, like the genetic side of it, and how um the research is coming along for finding cures and genetic trials, like for gene therapies and things. Um, so that's always interesting, and I think every time I go, I'm not a scientific person at all. I just take away like a tiny little snippet of extra pieces of information about the condition. But I think what was the most beneficial for me was just getting to meet people that either I've been speaking to online or people that have been listening to my podcast that I actually just got to meet in person. And yeah, there's nothing like the community, and it felt like I was home in a weird way because we were all the same. And usually when you're out in the big wild wide world, you're by yourself and you're the only one going through it. Whereas in this conference, there's less of them and more of you guys. Yeah, and it's great.

SPEAKER_02

Oh, yeah, it's it's flop, it's flip-flopped where you're more what's not the minority, yes. Yeah, yeah, for sure.

SPEAKER_00

Yeah. And just getting a chance to speak at the conference was just absolutely incredible.

SPEAKER_02

So that's it's gotta just give you like a push of motivation too to continue on with sharing your voice and advocacy and getting the stories out there.

SPEAKER_00

Definitely. It was just nice to see, like, I'm sure when you can relate, when you get the algorithms for the for the podcast or for your content creation, you just get numbers. And it's nice to actually meet the faces behind the numbers. Like, oh, okay, you guys are the type of people that listen to my podcast. Thank you. Um, so it it's nice in that way as well.

SPEAKER_02

It's human connection over online connection, which is, I mean, online connection, it's not that online connection is bad, but human connection obviously is so much different.

SPEAKER_00

Yeah, and you just get each other straight away. Like you don't need to explain anything. Yeah, you know, it's just that yeah.

SPEAKER_02

So you're in Europe, so your healthcare system is different. And I talked a little bit about this on a previous episode, but I guess I'm kind of interested, especially like with the politics going on in America with disability rights and rights in general. Do you feel as though your rights are supported in Europe as far as disability goes?

SPEAKER_00

Um, I'm really grateful

LGMD Conferences And Research

SPEAKER_00

for the NHS, which is the national health service in the UK, which is obviously free and I guess funded by taxpayers. Um, I'm so grateful for the NHS and I know they're under a lot of pressure right now. You know, without them and without the neuromuscular center in my local hospital, I really would be lost with my condition. And I know that, you know, any healthcare system at the moment seems really under pressure, but I'm just yeah, grateful to be seen and to have good, you know, good physiotherapists and good doctors that kind of want to get to know my condition to be able to help me. So yeah, I'm very grateful.

SPEAKER_02

Did you get medical gaslighting or do you feel as though like you were pretty diagnosed well?

SPEAKER_00

Um, I mean, I was really young, so I guess my parents were the ones that kind of led me to getting these, like uh getting these diagnoses done. But I'm fortunate enough to not have any negative experiences when it comes to being in the healthcare system. I did find out that after like literally only a couple years ago that uh two of my biopsies um that I went through to find out if I had celiac disease weren't needed looking back. But you know, I was so young and I was still under really good care, and then I'm just like, whatever, it's it's happened now. So it's fine. But I know, you know, I'm I'm very lucky and privileged to say that. And I know a lot of people go through a lot of difficulties when they're trying to get a diagnosis, especially if they feel like they're not being taken seriously.

SPEAKER_01

Mm-hmm.

SPEAKER_02

What is your wait time like to get into a certain specialty? Or once you're in, is it like quicker? What's the process like over there?

SPEAKER_00

Um, I guess it like I think it kind of depends um on what you want. For example, if you want a surgery or something, I I really can't I really don't know. I I I would say it's definitely like weeks to months. Um, like my boyfriend wants to get an allergy test, which is like quite simple, and the wait time was like nine months or something like that, just for an allergy test. Um, and I I guess it may be it's similar to the US in the way that waiting lists are just really long and the NHS, the healthcare system is understaffed. Um, but you know, I know that they're they're trying their best, and without them we would as a country fall apart. So I just hope that things change for the better because yeah, they they definitely deserve it. I'm I'm just very lucky that I've had a positive experience, which I know isn't always the case for a lot of people.

SPEAKER_02

So you can that's all I can say. So you can say that you're a journalist. What are you a journalist for?

SPEAKER_00

Uh yeah, I'm a journalist for the BBC in Wales. Oh damn.

SPEAKER_02

What did you go to school for?

SPEAKER_00

Um, nothing to do with

Faces Behind The Numbers

SPEAKER_00

that actually. So I did a drama degree. Uh so drama and theatre. Um, I did it in Welsh because Welsh is my first language, and Welsh is what I've done all my school and education in. Um, so I did the course in West Wales, and I guess during the course and COVID happened whilst I was in my first year of university, I just realized that being a theatre actress was just not really in the cards for me as a disabled person, and I know there's ways of adapting to that, and I know that there is a space for disabled actors for sure in theatre or film or whatever, but I just didn't like the way that I constantly had to change and adapt myself in comparison to the rest of my course mates who could all do really simple things that I just couldn't. Um, and I really got into media, and I think COVID kind of helped that because instead of doing live performances, we had to do things from the comfort of our own home. So I ended up doing short films and I really fell in love with editing, which kind of has led me to where I am now. Full circle. So yeah, so I I ended up getting jobs in the media and Welsh media specifically, and now I do digital content and digital journalism for the Welsh language news channel. Yeah.

SPEAKER_02

That is so sick. I love that for you. And like that's that's a that's such an accomplishment. Uh, too, being like young, too, like starting off your career and being able to have a really cool position like that.

SPEAKER_00

Do you like it? Do you enjoy it? I it's it's honestly amazing. And the BBC is um a really difficult place to get into because that's just so many people want to work there. So I'm very grateful to be there. Everyone's so nice, and I've learned so much. And it's been a year since I've worked there now, and yeah, I've just had so many incredible experiences, and I know how to do a TV package now for news, which is quite crazy. Oh my

NHS Experience And Wait Times

SPEAKER_00

god. Yeah, but I've also I've loved the opportunity to highlight just disabled stories as well. And like I said, I'm the only disabled person in my just immediate team. The BBC is very diverse as a company. Um, but I've just really taken on the opportunity to highlight more disabled stories and to use my own personal journey to help raise awareness, I guess.

SPEAKER_02

Yeah, it's just continuing on sharing your experience, and that's part of being an advocate too. So you're like kind of doing it all at once, and you're back into like you're in media, so it's like entertainment, which is what like theater is. So it's kind of cool that you're like merging into like a different side of things.

SPEAKER_00

Yeah, definitely. And I think presenting, which I do a lot of, and obviously in my podcast, is kind of it's not acting, but it kind of is, you know, it's it's a way of performing, definitely. So I like that I'm still getting to work with cameras both in front of and behind the camera. So yeah.

SPEAKER_02

I I just feel like that's so Leo. Like that's like Leo, which is not a bad thing.

SPEAKER_00

I've never thought of it that way. I'm not I'm not huge into like star signs and stuff. I mean, I know the general like stereotypical traits that I think I do relate to, unironically. Um, but yeah, I've never thought about that before. So I love that.

SPEAKER_02

Okay, to wrap it up, I'm gonna do some sick pics. So, like, what is like your go-to snack when you're not feeling well?

SPEAKER_00

Well, I'm a celiac, so I'm gonna have to say something gluten-free. I love a gluten-free pan of chocolate because pastries aren't very accessible when when you're gluten-free. You can't just go to a pastry shop or a bakery to get something. So I really, really value a gluten-free pan of chocolate that you can just put in the air fryer at the comfort of your own home.

SPEAKER_02

What's the TV show that you go to?

SPEAKER_00

Oh, either friends, which is my comfort show forever, or Crazy X Girlfriend, which, if you haven't heard of it, you have to get on it. It does talk about like mental health and disabilities, and it's just hilarious and comforting and amazing. I think I saw that. Yeah, I think I saw it.

SPEAKER_02

Well, like I was scrolling through. I'm like, hmm, this might be an okay. I guess I gotta watch it. This is your sign. This is my sign. Do you use mobility aids? I do, yes. And when did you start going into a wheelchair?

SPEAKER_00

Um, I think as a gradual process, like I realized the wheelchair isn't there for people who physically cannot walk, like it's for people who just need to take a break or Want to still be out and about with their family and friends, but just not burn out. Um, so it is a journey for sure. And I think we all have a bit of

Journalism Path And Welsh Media

SPEAKER_00

internalised ableism when it comes to mobility aids, like you instantly feel sorry for people in mobility aids. Um, but since posting more about it online, which has only been in the past few months, I've had just such amazing feedback, just encouraging other people to start being open about their mobility aids. And I guess I'm lucky to have people in my life that just don't make me feel like a burden for having a wheelchair and who would love to push me around. And I just love the fact that I have that now as a backup if I do have a bad day. Um, but I'm hoping to get an electric add-on to it soon so I can whiz around all by myself without needing someone to push me. Gonna be racing out there. It's gonna be over for you all. Yeah. Like done. Screw. I'm so excited. Yeah, who wants to race?

SPEAKER_02

No, honestly, me. And that's just me saying that I should be using mobility aids more. I it's the internal ableism in me and like not wanting to have that extra layer of feeling again like a burden or whatever it is.

SPEAKER_00

I think when I first started using it, I felt really ashamed. Yeah, but now like it kind of feels like a full circle moment. I first used it when I went to Disney that one time in 2017, and I was only 16, but I cried the first time. I was like halfway around Epcot and I was shattered. I just needed to sit down. Um, so my mum grabbed a wheelchair for me to rent, and I hated it. I felt so ashamed, I hated the way people were staring at me. But then I went to Disney this time, only a couple only last month, and I took my own wheelchair and I was so happy to be in it, and it kind of felt like a full circle moment. Yes.

SPEAKER_02

It's more empowering, and it is helping you, like there's it, it's literally there to help you, nothing else. So it's like, why do you have like this such this thing in your head that it's a negative thing?

SPEAKER_00

Yeah, like people need glasses if they can't see. Why can't we use a damn wheelchair? Exactly. Come on, it's 2025. Yeah, normalize them, please. Thank you.

SPEAKER_02

Okay for listening. What podcast do you go to when it that has nothing to do with illness?

SPEAKER_00

Ooh, I love Amma Chamberlain's podcast because you know, no explanation needed. But I also love um Amma Neal, who is an Irish influencer and makeup artist, and someone I'd love to get on my podcast. Nothing to do with disabilities, but I just she's so cool. And she talks about like a mix of things that we go through as women in our 20s, but also a lot of like activism and feminism stuff, and like her hot takes on different like pop culture things. There's a real mix, but it's called Here for the Crack with Emma Neal. Oh, love that. Okay, being like the Irish crack. Wait, what's the Irish crack? Like C-R-A-I-C. Like it's something Irish, uh Irish people say a lot, like, oh, we had a crack, like it's a crack. Crack. They say it like that. Like fun. Oh, like here for the crack means like I mean, I'm Welsh, not Irish, so sorry if I'm butchering this. Um, but it basically just means like here for the fun kind of thing, kind of vibe. All right, I'm gonna be saying that now.

SPEAKER_02

Okay, well, we're putting it out there. Let's get her on. Let's get her on your podcast. I hope so, yeah. What's a phrase or mantra or affirmation that really helps you?

SPEAKER_00

Um something that I've been kind of taking on to myself, and something I'm actually recommending in a podcast episode that'll be out by the time this is out. Um, you don't ask, you don't get. That's my thing. Like just if you think you deserve something or if you really want something, just ask for it because you never know. They might say yes.

Comfort Picks: Snacks, Shows, Music

SPEAKER_00

Close mouths, don't get fed. Exactly, yeah. And it's same with advocacy, like it's you know, double whammy. Yeah.

SPEAKER_02

Okay, what is the most surprising thing to you that has helped you feel better mentally?

SPEAKER_00

This isn't surprising, but music helps me just like switch my mindset straight away. But that's not surprising. I've love music, like music runs in my family, I'm a very musical person. Um something surprising, just like how being open actually really helps being that's a good one. More positive about it, because I didn't want to tell anyone and I was like, oh, if no one knows about it, it'll be better. But now actually, my quality of life is improved because I have been open about it. So yeah, let's go with that. I love that.

SPEAKER_02

Okay, so going back to like the music thing, what is your song pick? Like, what is your go-to song?

SPEAKER_00

Okay, I'm gonna have to go with Harry Styles because he's just like I've gone to Paris to see him, so I think I he deserves to be my number one artist. And um, any of his songs I'm just obsessed with. Um, a go-to song is so difficult. What's yours? Anything, Taylor Swift. That's okay. You know what? You so seem like a Taylor Swift girl. I love that. Yeah, no, I do love, I do love a Taylor Swift. I love Ariana Grande as well. Um, but my music taste is really like mixed. Like I love pop music, like Harry Styles, Ariana Grande, but I also am obsessed with RB. So Scissor is one of my favorite artists. Yeah. Um, Summer Walker, I love um I love house music as well. Like something so basically any music that just makes you feel good, like energetic. I'm not one for like sad songs, really, unless I really need to cry. But that's not often I don't want to make myself cry. Like if I'm feeling sad, I'd put on happy music to just like help yeah be better.

SPEAKER_02

Yeah. Music is what gets me bad as well. And I'm learning um guitar and piano right now. And I'm starting, I'm literally learning Fine Line by Harry Styles on the guitar right now. So it's so funny that you're proud of them.

SPEAKER_00

I'm so proud of you. Wow, I don't play the guitar, but it just it's such an incredible song. Do you play instruments? I do. I play the piano and I play the harp. Ooh, the harp. Yeah, which is a quite a popular instrument in Wales. It's a very Celtic instrument. Um, but yeah, I used to play at weddings and parties and things like that, but I think my stamina is just not where it is now. And also I want to I want to grow my nails out and have cute nails. Oh my god, that's the thing about it.

SPEAKER_02

Which you can't do. I can't do that. And that's like honestly been the I took my nails off, and that's how I know I'm serious about it because I love a good nail.

SPEAKER_00

Well, that's good. You know, you gotta build up your calluses on your fingers. And I had a deprived childhood, I was never allowed to have long nails, so I feel like I'm making up for lost time now.

SPEAKER_02

Yeah, absolutely. You have to, exactly. Oh, and like get your nails closer to the camera because I saw them on Instagram or something, and they're so dank. Yes, look at those.

SPEAKER_00

Thank you. So cute already for my birthday. Not that I have a lot of flowers in them at all, you know.

SPEAKER_02

No, no, you deserve it though. You're 25, like half a day or half wait

Mobility Aids, Internalised Ableism, Power Add‑Ons

SPEAKER_02

a minute.

SPEAKER_00

24.

SPEAKER_02

Oh, yeah. So it's not, yeah. You're 23 right now, turning 24. That's right.

SPEAKER_00

Yeah, sorry, I did lie. Let's just let's go back to the start. Let's start again. I'm 2020. That was all the practice. Mid-20s, like whatever. Young early 20s, whatever you call them. They all feel the same. Yes.

SPEAKER_02

So okay, one last question. I don't know. Maybe you don't splurge, but if you do, what is a luxury item that you like are hands down? I will splurge on it when it comes to illness and chronic illness.

SPEAKER_00

When it comes to chronic illness, ooh, um okay. Oh my god, tell me this is huge, but a holiday. Just because that's going somewhere warm and just like taking time out. I mean, I know this is massively privileged that it's not like I fix any like problem by going on holiday, but when I do, it's just like taking the time out to stop what I'm doing. I leave everything behind at home. It's somewhere warm, which really helps me. Like the warmth really helps my muscles, and it's terrible in the UK during the winter because I'm just like seized up all winter. Um, but I'm also such a busy person when I'm at home. Like everyone who knows me knows that I'm constantly whizzing from one place to the other before work, after work, on weekends. Like I'm always doing something, and it's not like I try it, like plans just happen to me.

SPEAKER_01

Yeah.

SPEAKER_00

But like when you're on holiday, I've scheduled all my podcasts, I'm taking a book with me, I'm just listening to music and lying down. Like that's not something I do at home. Yeah. So I don't know if that counts because it's not like I do that very often, but when I do, it's definitely a luxury that benefits me massively.

SPEAKER_02

Yeah, I could agree with that answer. What's your favorite place to go?

SPEAKER_00

Um, I went to Gran Canaria last year and I loved it. I went to an all-inclusive resort, but it was accessible, like the whole place was accessible. And I think when you stay in accessible places, you feel less disabled in a way. Like you don't have any barriers that separate you from other people, and I really benefited from that during that holiday, and we're going again this year. Me and my boyfriend, we've just we loved the place so much that we're making it this year's holiday as well. Um, but if I could go back, I love south of France. I used to go there a lot with my family, and Italy is just so beautiful. If you haven't been to Italy, I really recommend, and the food is amazing, even for celiacs.

SPEAKER_02

What um part of Italy did or have you been to multiple parts?

SPEAKER_00

Um obviously Venice is very popular, but very touristy. Um, I've been to, I mean, Rome is amazing, but Rome is a lot of walking, so I did that when I was quite young. I think my parents, knowing that I was gonna lose mobility, they really gave us like a lot of opportunities. So yeah, we did a big trip around Rome and Florence is beautiful. Um, but I'm going to Milan next week, which I'm excited about, and Lake Como, which I've never been to before. Oh both of which I've never been to before. So you'll have to just check out my Instagram because there'll definitely be pictures on there.

SPEAKER_02

Yep, absolutely. Over a decade ago, I operaired over in Italy on the island of um Sardinia. So I was there for a full summer. And then after I was done with it, my parents came out and we did like a little tour of Italy and we hit like Venice and Florence and Rome. And that was looking back at it, like I'm super grateful that experience because I don't think I could do all that now, especially like what you said, like Rome is a lot of walking. I mean, I feel like in Europe, well, when you're touring anywhere, when you're on vacation anywhere, like kind of wanting to see a lot of different sites, you're gonna be doing a lot of walking, you're gonna be doing a lot of activity. And at that point, I was able to, and so uh yeah, I'm grateful for that as well. But Italy, oh my god, if I could go back, yeah, your Instagram stories are gonna be on blast.

SPEAKER_00

Um I apologize in advance for the person I'll turn into when I go to Italy. Honestly, I'm so sorry. But you know, that'll be your sign to come back. And if you do cross the pond, you should come to visit Wales because Wales is also a beautiful country. Oh, I've been wanting to get there. Yeah. Thank you so much for having me. It's been amazing.

SPEAKER_02

It's been so nice to actually chat with you. Oh my gosh, it's so nice to actually meet you and talk and chat, and I could do it all day, and we'll have to do it again sometime. Honestly, I'm down.

SPEAKER_00

Part two when? Yeah. No, literally. Get it sorted. Get it scheduled out. Comment below if you want a part two.

Rest, Warmth, And Accessible Travel

SPEAKER_00

Yeah. And if you haven't had enough of my voice yet, comment.

SPEAKER_02

I mean, I I could listen to it for hours, but I'm somebody that's just like a sucker for accents.

SPEAKER_00

So Okay, well, there you go. You can edit my podcast instead then. Do you find that like editing yourself just cringes you out and you hate listening to your own voice? Especially when you say something you're like, oh my god. Definitely. So let's just wait, we can edit each other's podcast. Perfect. I actually would appreciate the help. I'm just out of my depth here, but you know, we're thriving at the same time.

SPEAKER_02

Yeah, you do what you gotta do.

SPEAKER_00

Go follow her podcast on Balanced Podcast, go listen to it. Thank you for supporting me so much on Instagram, by the way. I really appreciate it. And let's carry on. Girls supporting girls, right?

SPEAKER_02

Girls supporting girls. We need more of it, especially in the disabled community. So definitely. I was hoping to talk to you.

SPEAKER_00

You too. Bye. Bye.