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Neurodivergent Mates
“Neurodivergent Mates is a podcast delving into Neurodiversity and Mental Health, hosted by two neurodistinct professionals – Will, the ADHD and Dyslexic host, and Kevin, aka Photon Jon, an Autistic and ADHD cohost. They candidly share their personal experiences, discussing topics like relationships, dating, addiction, trauma, sex, education, careers, parenting, the workplace, and more.”
Neurodivergent Mates
Living a Full Life With an Invisible Condition - Bella Stevens
In this episode of Neurodivergent Mates, we chat with Bella Stevens, who shares her inspiring journey of - Living a Full Life With an Invisible Condition.
Bella’s story is one of resilience, adaptability, and triumph over the unseen obstacles that many face daily.
Join us as we explore her experiences, insights, and strategies for navigating a world that often overlooks the complexities of invisible conditions. Whether you’re living with a similar condition or seeking to understand and support someone who is, Bella’s wisdom and perspective offer valuable lessons for us all. Don’t miss this empowering conversation on Neurodivergent Mates!
QUESTIONS:
1. Tell us a bit about yourself
2. Tell us a bit about your work
3. At the point of diagnosis, what were the expectations that the doctors set with you?
4. How has that changed since? Have there been advancements in treatment?
5. What are some common misconceptions that people have about your condition?
6. What roles do physical activity & exercise play in managing your condition?
7. We had prep conversations with you for this around terminology. Could you elaborate on why your preference is "invisible condition"?
8. To sum up, what's the message you'd like to get out to others with your condition or an invisible condition in general?
9. Where can people connect with you and find out more about your work?
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You're listening to NeuroDivergent Mates. Hello and welcome to another episode of Neurodivergent Mates. I'm your host, Will Wheeler, joined with my main man, Photon John. What's going on, brother?
Speaker 2:Good to be back.
Speaker 1:Good to be back. Good to be back, you're feeling a bit relaxed, mate.
Speaker 2:Nice and relaxed A couple of weeks holiday. It's been very nice I play guitar in video games, and that's about it.
Speaker 1:Yeah, good man, Good good, and did you go away anywhere or see anyone?
Speaker 2:No, I stuck close to home. Mum's been a little unwell, so looking after her Just having a good time though that's good. No responsibilities.
Speaker 1:Autistic time out, you know to just do nothing, not people Did I see you were driving along and your dog was in the back looking out the window or something. Yeah, he's a pretty cute dog. Yeah, what's his name? Bentley Bentley.
Speaker 2:That's my sister. She named him.
Speaker 1:Oh, nice, nice, nice. But you know what? What we should really be talking about is our awesome guest that we've got coming on the show today. So today, what we're going to be covering is living a full life with an invisible condition, with our good friend, bella Stevens. Bella, thank you so much for coming today. How are you today? Oh, whoops, we got her on mute, so we better take her on mute.
Speaker 3:I'm so sorry for that Talk about setting you up for failure.
Speaker 1:Bella, how's going?
Speaker 3:I'm so good. Thank you so much for having me no, no problem at all.
Speaker 1:No problem at all. We were actually um before we started the show. Um bella was like we'll talk a little bit about the olympics and and stuff like that, and you were saying that your father has a friend's kid or son or daughter who's going to be competing in it or something. Is that correct?
Speaker 3:yeah, one of my dad's client's daughters is competing in the relay.
Speaker 1:Nice, nice. What have you been thinking about?
Speaker 3:the Olympics anyway, to be honest, I actually haven't watched too much of it, Other than the track and field, like in the events that we were talking about before that 100 and 200 because of the. Netflix series we've been watching, yeah yeah. It's cool watching people that you can recognise from other areas like compete.
Speaker 1:Yeah, cool, cool, cool, cool, Awesome stuff, and we might get back to that in a sec, but what we might do just before we get started. So, for any new listeners, if you haven't already done so, please subscribe, like and follow to all of our social media platforms. We're available on TikTok, facebook, instagram, x, twitch, youtube, linkedin, and you can also check us out on anywhere where you listen to your podcast. Please subscribe, give us a thumbs up, rate the show. It really helps with the algorithm. Also, too, we'd like to do a big shout out to our sponsors, neurodiversity Academy. You can check out all the awesome work we're doing there at neurodiversityacademycom. Also, too, if you are listening, just a little bit of a warning Some discussions may be triggering.
Speaker 1:If you need help, reach out to a loved one or call emergency services. We are not doctors. This is a space for sharing experience and strategies. And, last of all, if you've got any questions during the live show, which we're currently in at the moment, please feel free to put it in the comments section and if it's a good question, we'll put it up on the. Put it up on the screen here for Bella or myself or Photon John to be able to answer that for us, but that's all about that. There, bella, you ready to rock and roll?
Speaker 3:Yeah, absolutely, let's go.
Speaker 1:Nice, nice. You know what I think the best thing? You know, I know a little bit about yourself, but I think our guests would really love to hear a little bit about who Bella is.
Speaker 3:Yeah for sure. So everyone, I'm Bella, I am 23. I live on the northern beaches of Sydney. I'm currently a holistic health coach and personal trainer, and so I have my own business in that, which I'll talk a little bit about later. But in terms of pardon me, let's get that out of the way, oh good. And so I have my own business in that, which I'll talk a little bit about later. But in terms of pardon me, I'm just getting out of the way. Oh good. In terms of most of the way that I spend my time, I'm a mad keen surfer. I'm very much in the Pilates space, and I've been doing a fair bit of volunteer work recently for the guys that we met at the Thriving Workplace event that won another group.
Speaker 1:So yeah, nice, Cool, cool. So you know, I know you were into a fair bit of surfing, right, like you've done some pretty awesome stuff with surfing, you weren't watching the surfing at the Olympics.
Speaker 3:No, I haven't watched much of the surfing at the Olympics this year, because I usually watch the World Surf League.
Speaker 1:Yeah cool.
Speaker 2:So the events that are pretty regular. Did you see the photo, the viral photo, of that guy who's like standing upright with his board upright next to him?
Speaker 3:No.
Speaker 1:You know the Brazilian. I think it's Gabriela. What's his name? The Brazilian Gabriel.
Speaker 2:Oliveira.
Speaker 1:Yeah, yeah, yeah, yeah yeah because he was watching him. Yeah, yeah yeah, yeah, yeah, because he was mid-air coming off a wave and then he's just standing there going like number one, like that. It is a pretty awesome If he gets like I don't know if they've actually finished, I don't think they've done the medals yet, but if he wins gold it will be pretty awesome.
Speaker 3:Yeah, yeah, absolutely no, I don't think they've finished it yet.
Speaker 1:But you used to do a little bit of surfing, correct? Did you do it professionally, or I can't remember what you were saying, or you've gone and surfed against professionals professionals, probably a stretch.
Speaker 3:I was competing, I've come well. I started surfing when I was about five or six, um, and then I was surfing competitively from when I was about 10 or 11 till about 18, 19 um, is that like grom?
Speaker 1:is that that's groms? Is that is it called groms? Yeah, that's right groms for sure.
Speaker 3:Um, and then kind of going into, not to the stage where you I wouldn't say professional, because you've won a couple of competitions but you're not getting paid by sponsors and things like that. But yeah, very cool.
Speaker 1:No, no, no, that's awesome, awesome. But you know a big thing, what we wanted you to come on today and we're very big on, you know, trying to really showcase what people do. So you know, please share a little bit about the work you're doing. You know you're doing some really great stuff about around health and fitness all of that type of stuff.
Speaker 3:We'd love to hear more about it yeah, so, as I mentioned before I have. I started my holistic health coaching and personal training business two years ago now, so I do a bit of a mix of one-on-one work with like face-to-face clients and also online personal training sessions, and then in the health coaching space, that's also like online, and I have a couple of online offerings that are courses that I have written but don't involve like personal coaching by me. I work in a couple of Pilates studios across the northern beaches, just for a bit of variety. I'm kind of one of those people that likes to have a couple of things going on, so work isn't the same every day, are you sure you're not ADHD?
Speaker 1:That could be a possibility, right.
Speaker 3:For sure. And then last week well, actually you might think this, you might think the same after I say this but last week I started um, I'm a big fan of cooking, so I started my own little energy ball business out of my home actually, I saw that on uh instagram before and I liked it.
Speaker 1:I was like, oh okay, nice, good job. So that that's your new business, is it?
Speaker 3:yeah, so it's just like a fun little side business, but I feel like it works really well. With the holistic health coaching a lot of my clients often say you know, they get that mid-afternoon crash kind of in energy. So these are really good if you want to go to the gym after work or if you don't have time for like a full breakfast. They're kind of the healthier, like the healthiest versions of like bliss balls that you will get are they gluten-free?
Speaker 1:they are that's good, that's good, that's awesome. No, um, you know, um, I think a big thing as well is that I know for myself, um, especially as you get older, all of that type of thing that, like you know, your mind and body are so such a valuable asset type of thing, and I think, for me, especially, taking the time out to say meditate or even just do exercise, is so vital, do exercise is so vital. So, you know, with a lot of the clients that you work with, you know, are they coming to you with, say, I don't know, they may have goals in place and they're like look, I'm really struggling with this, I'm not getting through my day. By the end of the day, I'm feeling like this what are you helping them to achieve?
Speaker 3:out of curiosity, what are you helping them to achieve, out of curiosity? So I guess I work in a couple of different instances with that in particular. So with my personal training clients, a lot of the training is revolved around strength-based work, but also I incorporate Pilates but also kind of rehab, for I have a couple of older clients this is why I say this for joint health and joint pain as you kind of get older, keeping those muscles and joints strong is really important, Just for even simple things like walking up the stairs in your home or being able to pick up kids, a couple of mums, like coming back after pregnancy, you know, redeveloping core muscles, all of that. And then I think the flip side of that is the health coaching side. So if people are really struggling to get through their day energy-wise, you go okay. Well, like, let's look at the nutrition piece, Are you getting enough sleep? What else? I guess, again like the type of exercise, that they're doing.
Speaker 3:It's a very like all-encompassing, and that's why I love the holistic health is. There's so many different aspects that you can look at, but I think a particular area that I'm really passionate about is gut health, for sure.
Speaker 1:Yeah, no, no, definitely an important topic. But you know, a big thing, when we were talking about getting you coming onto the podcast and you know and this is a topic really dear to yourself is that you know you do live with an invisible condition.
Speaker 3:you know, Did you want to share that with the audience and you know how has that maybe helped you to on the path to what you're doing now, type of thing yeah, so I was diagnosed with cystic fibrosis when I was a couple of weeks old, so I've had it for the last you know, 22, 23 years, um, and I guess is this the time that you want me to talk about, like the, the story of what, the expectation oh yeah, well, just share it and we'll just blend it into the podcast, mate.
Speaker 3:Yeah, yeah, it's all good so from a very young age. I guess the a couple of the expectations that we were given.
Speaker 3:I was a baby at the time so I can't recall much of this, but what the information was passed on to my parents was that I would be expected to be in hospital kind of twice a year for about a fortnight at a time to be on IV antibiotics. I would have to have daily physio, so like chest percussions, where they would lightly tap on your lungs to help clear the mucus. Um, because, for just briefly, like people with cystic fibrosis, the mucus in their lungs is slightly thicker so it can get stuck, um, and that's kind of where more of the like infections and colds and stuff come from. So if you can keep your lungs clear, that's kind of the name of the game. Um, I have like digestive enzymes every day to help with like food metabolism and food digestion.
Speaker 3:But I think all of that in terms of like my health journey and the reason that I've moved into the space that I have, I'm a really big believer in that you're always going to be the best advocate for your health. You know, you know your body better than anyone and I think as well, when you're diagnosed with a condition you get all of the general information or everything that they sort of know at the time that you're diagnosed with, or you know at the time of diagnosis. But that doesn't necessarily mean that that's going to be your reality. Reality. And I think me and my parents were really. We really tried very hard to make sure that what the doctors told us was not going to be our reality. So I, for example, with the whole like hospital admission thing, I think I've been admitted to hospital maybe four or five times in the last 23 years.
Speaker 1:Wow, Considering that you were told it would have been every two weeks type of thing, correct?
Speaker 3:Yeah, for like two weeks twice a year, absolutely, and like a big part of that came back to okay. Well, what were the expectations? What do we have to do to create a different health story or a different health journey? And we did all of the research, we asked all of the questions, we trialled and experimented with 8,000 different things, you know.
Speaker 1:Did I see sorry to cut you off there, but did I see sorry to cut you off there, but did I see him? Because, like, obviously after um, I had met you and found out a little, I did some research or that. Did I hear correctly that your parents moved closer to the ocean or something? Because the sea, is it? The sea air, for example, is better for people like yourself.
Speaker 3:Yes, absolutely. So. We moved to the beaches when I was three years old because, funnily enough, actually, the doctors did tell us this, that being in and around the ocean air. So side note, but one of the treatments for people with cystic fibrosis is saline nebulizers, so you're basically breathing in salty air to help thin and clear the mucus in the lungs.
Speaker 1:So is that like a nebulizer, like the thing you put on, and that's all that is a salty air. So it's not like chemical, because I remember, like I'm an asthmatic and I remember as a kid I'd have to put on the nebuliser, but that was all chemical. Well, I don't know if it was chemicals, but it was some type of antibiotic or something.
Speaker 3:Yes, so this one in particular is hypertonic saline, so it is just like sterile salt water. Basically, that's interesting. But there are other nebulisers that you can have that are antibiotic-based ones to help clear if you have lung infections or anything like that. But the saline nebuliser is still one that I do every day, even living near the ocean. But I think that has been such a big like piece in being able to keep my lungs the way that they are and surfing on top of that you know who would have thought that that would be because, like I'm assuming, like you know you, you'd probably struggle with breathing at times, and that correct?
Speaker 1:was there times where, say, you were paddling out on your board and you're like, oh my god, I'm really feeling like I can't breathe today, type of thing, because you've got to be, you know you've got to you've got to be quite. I've done it before. I was screwed when I was.
Speaker 3:When you paddle out back there, I was gonna say every time I go surfing no, it's not that. But I was absolutely like, and funnily enough, because I'm a surf instructor well, so I often take people surfing to teach them.
Speaker 3:You know the whole world of surfing and getting up and jumping on waves, but paddling is 100% the hardest part about surfing Totally Because it's a totally different fitness to anything else and I think for me now I definitely don't struggle with it anymore, but it's just one of those things that you build up a tolerance with, like anything.
Speaker 1:Yeah, yeah. So it's like running long distance. You know, the more you do it, the better you come at it, type of thing. So would you say that your lungs have I don't know, I don't know how it sort of works, but have grown stronger, type of thing, from that?
Speaker 3:Yes, most definitely, and I definitely have periods where you know like you get sick and you've kind of got to work your way back up um, do you find like change of of, like the seasons, do that? So winter I'm much more like mindful because I find the cold air actually my, my lungs feel quite sensitive, similar to asthmatics, I suppose.
Speaker 1:Yeah, because I struggle with the cold air.
Speaker 3:Yeah.
Speaker 1:Dry, cold air. Not humid dry air isn't as bad, but cold, cold dry air is.
Speaker 3:Yep, absolutely, and I even so. For example, in winter I will sleep with a heater on in my room to keep the air warm.
Speaker 1:Yeah, yep.
Speaker 3:I can't remember. It must have been a few years ago now, but it must have been quite a cold and dry winter. But it was like clockwork at like two or three am each night, or morning, or whatever you want to call it, I would wake up coughing because the temperature drops at like a certain time of the night you go. How weird, you know yeah no, no.
Speaker 1:But do you know what as well? Right, there's been times where I've, say, gone to melbourne and stayed at like a cousin's house or something, and they didn't have like a heater in the room. They gave me like heaps of blankets and you're warm, but you're breathing in the cold air, I'm assuming.
Speaker 1:So if you did that, that could be very bad for you it's just, yeah, like it just makes you cough, honestly, because it's changing the pressure and it's changing the temperature inside your lungs so it just, you know, ends up in coughing fits almost yeah, crazy, and do you find as well sometimes, like I say and obviously asthma is probably a lot different to what you're, what you're, what you live with, for example but I find that it's like if I, if I get caught, it's hard to explain but say, if I have a night where I'm out in the dry air or go to sleep without the heater on or something, I can get that caught in that little window and that could cause my asthma to be bad for like a month if that makes sense, yeah, yeah, yeah.
Speaker 1:And then I have to be like really on top of it, like seriously. I only just sort of got over a sort of spell of asthma, probably just the last couple of past week or so you know. But that's from having to, you know, because I did have the door open one night and then I breathed some cold air in and I woke up and I was sick and just one thing led to another, but crazy times.
Speaker 1:Yeah, crazy times. But out of curiosity, right, you know we've spoken about, you know, treatments and all that. Have you seen that treatments have changed over the because? And I will say that one thing I remember when I was going to school there was a girl who had cystic fibrosis when we were in school and she actually passed away, you know. So it's a serious thing.
Speaker 2:What's that? Well, just to frame it as well, um, I had a friend, or my cousin had a friend when I was um in my early teens, um, and this was this is in the 90s um, yes, I'm that old, um, and uh, uh, her life expectancy was, um, you know, 20s or so or something like that. But I've recently met other people with cystic fibrosis that don't have a lot of exposure to it, but I found that that has changed quite a bit life expectancy and treatment.
Speaker 1:So yeah, Because I've known some people to get like lung transplants and stuff like that. I've known some people to get like lung transplants and stuff like that, so you know what has changed since, say since you were young, or what's the, what's the treatments like these days, that people are living long lives these days yeah, absolutely, and so you think for me, for example, like that was 20 years ago that I was diagnosed, so the information that they have around it is very different now and much like much more progressed.
Speaker 3:I would say, um, but yeah, what do you mention? You know things like lung transplants or liver transplants as well, so cf does affect a couple of the organs in the body as well. Um, but things, can I ask?
Speaker 1:how can I ask how it does that? Out of curiosity, like, what does it do that it affects, say, your liver? For? And it probably sounds like a really dumb question, but you know, I'm thinking. I'm thinking like liver, like you know, uh, someone who's a real bad alcoholic is gonna have liver problems or something, can? It's sort of like oh okay, well, how, how does that work? Type of thing.
Speaker 3:It's just interesting the liver one, I probably can't give you a good enough answer, but pancreas I can. So, for example, like having to have digestive enzymes, because the way they used to explain it to me when I was younger was like picture your, I guess, like pancreas and internal system as like a fan that's digesting food, and they basically said so your fan doesn't spin like fast enough, so we give it like extra help to help with the nutrition absorption, for example. So that would be one example Okay, there you go.
Speaker 3:I'm thinking of a band in your stomach or something I know I was so long I was like and it really is like a symphony right.
Speaker 2:All your organs, they all work in concert. Um so, when something is out, everything else is out, yeah yeah, and other things.
Speaker 3:Definitely have to try and not compensate, but work harder for sure see, I remember when I saw you speak at the um.
Speaker 1:What conference was it? Uh thriving yeah, yeah, conference, right, you were talking about like you could have like a full night's sleep and you would still wake up exhausted. What was that like? What was cool? Was that because you weren't breathing correctly or you were coughing all night, or what was the go with that?
Speaker 3:I actually probably CF would play a part in that, but I wouldn't say that that was CF related per se. I think that was very much like the job that I was in and the hours that I was working. I felt like I couldn't properly take time to, you know, really take care of myself and make sure that I was getting appropriate rest. Or even, funnily enough, I was speaking to a friend like the different types of rest, you know there's not. Sleep is not the different types of rest. You know there's not. Sleep is not the only type of rest that we require. You know, mental rest, emotional rest, um, I felt like I probably wasn't getting enough of that as well.
Speaker 3:Um, but yeah, that period was. You know how we talked about burnout. At that event, you're kind of getting close. I wouldn't say that I was completely, because I know some people have been through much trickier periods of burnout, but I would just say that that was a um, my body trying to catch up with the amount of work that I was doing yeah interesting, can I just point out it's.
Speaker 2:It's really interesting these parallels that I'm seeing because will and I have spoken a lot about how you know entrepreneurial tendencies, you know happen a lot with neuro divergent people, um, and and a lot of the reason for that is needing to be able to, uh, organize your work around your requirements. So that you feel, you know and you know it's something that I'm sure everyone can relate to organize their work around their mental health and everything but in particular you're diverging people it sounds.
Speaker 2:I mean, I'm hearing really interesting parallels here where starting your own business seems like the inevitable way to go to. You know, fix this sort of problem that you're talking about and burnout. I find that an interesting turn of phrase as well. We use that a lot in the autism world and the ADHD world.
Speaker 3:Yeah, well, funnily enough, the panel that I spoke on at that Thriving Workplace event was intentional work-life design and they asked me to speak on it because of my experience, I guess, yes, with my health condition, but the reason that I have curated my life the way that I have is so that I can take really good care of this and of my health but also do the work that I'm really passionate about what sort of work were you in prior where you were getting to that point of burnout?
Speaker 1:if you don't mind sharing because, it'd be interesting to see where you were to what made you go?
Speaker 3:okay, I need to do this and now I'm here, type of thing yeah, so I was working as a personal trainer in a commercial gym at the time and I was doing, you see, when you say this as well, people go, oh, you know, like 35 hours, that's not a lot. So I was doing 35 hours of work, which was in a gym in a.
Speaker 3:They were half an hour sessions. So I was doing 70 sessions a week and most of them were back-to-back for about six hours at a time. So I was doing split shifts, starting at like 5 am, work until about 12, and then I would go home, literally sleep and eat and then come back to work from like 4 till seven.
Speaker 2:Were they aware that you had cystic fibrosis?
Speaker 3:Yes, but it's also again like what we're talking about an invisible condition, and it wasn't something that I shared with a lot of people for a very long time.
Speaker 1:And people probably wouldn't understand either.
Speaker 3:Yeah, well, most people go. Well, what is that? What does that mean? We?
Speaker 2:hear that, we hear that.
Speaker 1:Well, yeah, we do hear that, but we also were sort of thinking that when, like, we were getting the questions ready for the podcast, we're like this is really interesting because we don't know enough about it. It will be interesting to actually learn a lot more about it while we're speaking to you, type of thing, because I think as well that you know and, and kev, I meant photon john like um, we, um, uh, you know, some people just don't understand. You know, we do need breaks sometimes To tell you the truth. Everyone needs a break.
Speaker 2:Do you know what I mean?
Speaker 1:Like if I was being pushed like that, we'd all probably burn out, if that makes sense.
Speaker 2:Sometimes I feel like we're out here fighting for everybody. You know, not just the invisible condition or neurodivergent crowd. It's, um, it's. You know. All three of us can sit here and say that having the ability to take control of our work a bit more our work life and balance it in a way that we knew no work with us sort of speaks to the idea that if our bosses had listened to us in previous employment and allowed us a bit more flexibility around that, we'd probably still be at some of those jobs. Do you know?
Speaker 1:what right, sorry, sorry. You know how, like spanish, um the spanish culture has like a siesta at lunchtime I wonder what that well, I'm free. I'm pretty sure, like japanese, like maybe japanese culture does something similar, because I've seen pictures of where people have like. Is it French? I don't know, but like you, see beds. Yeah, you see beds at their like desk and they all have like a little bit of a sleep at lunchtime.
Speaker 2:Yeah man Nap. Time should not stop after kindergarten.
Speaker 1:Yeah, yeah. But I just wonder, like it would be interesting to maybe even see, like if there was research behind it or something, how that would affect people in the workplace, or are they more productive? I don't know, it would be interesting to look into.
Speaker 3:Definitely.
Speaker 1:Because I have, I don't know. I might feel because I don't know, I might feel because I don't know about you guys, if I had a, if I had a nap at like lunchtime, I'd probably feel a little bit groggy and I'd need a little bit of time to um to get myself back together. But then I'd have a second wind and I'd probably be able to put in more work, if that makes sense.
Speaker 2:You take an hour but you sleep for 20 minutes. That's the key.
Speaker 3:I was going to say there's actually they have done studies on it but there's a sweet spot in terms of if you sleep for less than 20 minutes. So if you sleep between half an hour and, I think, an hour and a half, if you wake up outside of those times you won't feel groggy. But if you sleep like, if you wake up in between that, 30 minutes and an hour and a half, you will uh, yeah, I think it's called.
Speaker 1:Is it called sleep inertia or something? I think it's something like that. I can't remember, I really can't remember, but do you know know what? There's another. So if you go like to Germany, for example so I remember when I was in Germany you can actually this is a funny one, and I don't know if it makes you more productive but you can actually go down to the beer garden and some people actually sit there and like may take like a longer lunch and have a few beers with their mates, all of that. Then they go back to work. And if you take a longer lunch, for example, because you're hitting the piss with your mates, they then work a little bit longer into the night, type of thing. So I don't know how that would be in productivity, or maybe that's where we've got to do research on that, but it seems to work for them so if I have a couple beers and then stop, I'll just fall asleep.
Speaker 3:I feel like there would be a point where there was just no coming back like yeah totally.
Speaker 1:I think the australian culture is just a little bit, probably not as disciplined like some of these other cultures.
Speaker 2:When I was in Vienna and everyone was just drinking on the streets, I'm like, yeah, this is awesome, but if you did this in Australia it would be absolute chaos.
Speaker 1:Yeah, man, there'd be fights, breaking out all of that type of stuff. But moving on from all of that, now you know and I think this actually works in well to it what are some common misconceptions that people have about your condition.
Speaker 3:So this is actually a really interesting question. When you sent this through I wanted to think about it a little bit because, first of all, a lot of people actually don't know what cystic fibrosis is. So when I say CF, because of the abbreviation, people often think chronic fatigue. That's like one misconception. But another one is cf is different for everyone.
Speaker 3:So because it's a, it's a recessive gene condition, it means that there's there needs to be two genes that come together to make you know one. So, like my parents obviously had one each and then when they had me, they came together. But because those genes there are like heaps and heaps of different types of gene combinations that still create cystic fibrosis, it means that it affects people in different ways. So the stories that you were telling just before about, like the people that you knew with CF, it can be anywhere from like mild to quite severe, and I think that's what a lot of people don't understand, because I've had like quite a few people when I tell them they'll be like, oh look you poor thing, but it's also like my life's fantastic. But I have also worked really hard to make sure that it is that way. But I think that people think it is just like a one-size-fits-all that would probably it's like neurodiversity type of thing.
Speaker 1:It's almost the exact same thing. When people um explain neurodiversity type of thing, it's's so diverse within itself that well, yeah, and you can't. There's not a one-size-fits-all type of thing and all of that type of stuff there. But you know it is interesting because but you know what would you like more people to know about it out of curiosity, like you know, and I think, and if we're looking at from a neurodiversity perspective, for example, right, sometimes, like I know, um, photon john and myself are sometimes like I'd be great if people just knew that, um, uh, I struggle in a hectic work environment or I need a little bit of time at lunchtime on my own, or whatever that type of thing is. What would you like people to sort of know about it type of thing?
Speaker 3:Such an interesting question because I think as well for so long I, and because it is an invisible condition. I think as well for so long I, and because it isn't an invisible condition, I almost didn't want people to know, from the point of view like I didn't want them to think, to treat me differently, or that it affected me in a way that, like normal people, can't function. So I guess what I want people to know, sometimes I feel like it's I want people to know. Sometimes I feel like it's I want people to know how hard I have to work to present like a normal person.
Speaker 1:Yeah, well, so many, yeah, masking type of thing. Yeah, wow, so many similarities.
Speaker 3:Yeah, because I think like oh, I think as well, it would be good if people knew like similar sc sense but the lengths that you have to go to to create health that other people don't have to work as hard for, for example oh my god don't even get me on that train, because that's totally like other conversation, but I think so like for me personally, I don't drink alcohol, um, and like I don't smoke or you know anything like that.
Speaker 3:But for other people that do, there's no judgment behind it. But I go, I work so hard to create the health that I have for myself and these are the choices that I have made. So people will often be like, oh, like, why don't you drink?
Speaker 1:But I don't want to have to explain what's wrong with you.
Speaker 2:Yeah, it's a healthy story.
Speaker 2:But see, you know it's a growing trend among people and even like my friend group and stuff are just quitting drinking, especially young people at the moment. And you know, I've read a lot about it and spoken to my friends about it and they're just tired of that question. It's that very Australian culture. It's like health issues or not, or condition or not. They're just like oh, why are you drinking? It's like it's un-Australian or something, and I think people are just looking after their health. We need to stop. It's a really outdated kind of thing. I say this while I'm sitting here having a beer on the podcast.
Speaker 1:That's okay, can I say, but would it get so obviously you're not drinking or whatever like that right? Is it always assumed that you're now the designated driver? Are you happy with that, or is it like, just for one night, I'd really like to just not have to drive.
Speaker 3:well, you drunken idiots I don't know, maybe it is so during year 11 and 12 at school, like all my friends, would you know, drink, so I was 100% the designated driver. Then All I could think about was the amount of money I've saved you guys in Ubers is unreal.
Speaker 1:Pay up, pay up right.
Speaker 3:But now, thankfully, like the friends that I have are so much more appreciative of like me dropping them places and I'll often offer because I want to make sure that they get home safe and all of that. But I think the gratitude piece you know is nice.
Speaker 1:Yeah, yeah, totally, totally no, that's awesome. But you know, I think, going back to probably, you know especially the work you're doing and all of that, but what role do I think that should does, but it's okay. What role does physical activity and exercise play in managing your condition?
Speaker 3:I would say it's probably the biggest aspect of managing my condition. So, from like, just to give you a bit of a picture of it, but from when I was very, very little, I think the first probably form of exercise I did would have been like jumping on a trampoline. So my like, my parents would help me jump on a trampoline. Again, that's good.
Speaker 3:From a like lung clearance and, um, you know, bouncing the, bouncing the stuff off your lungs well, but while it was fun, too correct fun, exactly like I think as well, when you're so little, you don't understand, like you don't, you don't have the information, you're not aware of what's going on. So, fine, my parents were great at finding like fun ways of getting me into things without it being like, oh, like you have to go to swimming or you have to learn how to surf or any of like anything like that. Um, and then, from like when I was quite young or when I could then move into these things like swimming, surfing, all through school I was doing like every sport imaginable, imaginable, like cross-country running, basketball, like touch football, and then, as I've gotten older, very much like weight training, boxing, pilates. So it's been an evolving, I guess, journey exercise-wise, and sometimes you enjoy doing things more than others, sometimes you get sick of them. You find something new. It's great there's so many different forms of exercise and it is so much fun.
Speaker 1:So I would definitely say it's like the biggest part of my health journey do you know what just come to mind while you were speaking just then, especially thinking about you jumping up and down on a trampoline type of thing right it's actually got nothing to do about you jumping on a trampoline, but I was only saying this to my wife the other day that I find and sorry to go back to my asthma, but back when I was like younger, I used to find I would struggle with my asthma a lot more than what I do as an adult. But when I think back to it being a young kid, I was being a young kid, so you know I'd want to go play Spotlight or Tiggy at night in the middle of winter at my parents'.
Speaker 1:You know, tiggy, you're touching.
Speaker 2:I haven't heard that term since the 90s.
Speaker 1:Yeah, yeah, yeah, yeah Well.
Speaker 2:Tag, whatever you want to call it. Tag for American viewers out there.
Speaker 1:Yeah, yeah, yeah, or whatever you want to call it yeah, yeah, yeah or whatever you want to call it right and um, you know you I'd be out there breathing and then I remember I'd be like, but you know I wanted to get back out there because it was fun and it was more important to be out there having fun than thinking about, oh gee, I should be sitting in the warmth breathing, like warm area. So like as a kid, often I was like getting really sick or having asthma attacks a lot more often. Um, you know, now I very rarely have it maybe just more the change of temperature.
Speaker 1:But you know, did you find, maybe being a young kid, that it was a lot worse than say, for example? Than say, now being an adult, you're more mindful of what's going on, if that makes sense.
Speaker 3:I think I've definitely learnt a lot more now to be able to take the best care of my health possible. I think when I was younger as well, it really came, it really fell back onto my parents and they did an exceptional job in terms of like making sure that I stayed healthy.
Speaker 1:Can I just say sorry that my parents did an exceptional job too, but I was an undiagnosed ADHD kid running around like a chook with my head cut off, so there was a lot of other things my parents probably had to deal with as well.
Speaker 3:I think with like the parent piece as well. Oh no, what was I going to say? I just lost my train of thought. No, what I was going to say was, when you're a kid, there's kind of that like free-spirited, like I'm just going to do whatever I want and have fun, and I actually think for me in that instance, that actually did me a really like great service, because I was always just running around and, you know, being a normal kid, and for me, because of the exercise part and the activity part, that was one of the best things that I could do. I did have to be really mindful about being in situations around other kids that you know that may be sick or that may have had like colds and flus, because it's a lot easier to pick up infections and bugs, especially when you're young and when your immune system is still trying to develop. So places like child cares or you you know indoor swimming pools like my parents tried to keep me away from them Wow, interesting, but I'm not. No.
Speaker 1:Were you affected by, say, covid at all? Like is that a like? I know it's a bad thing, but like yeah, out of curiosity, the flu is a thing, but like, yeah, out of curiosity To flus and things.
Speaker 3:So same pretty much as any like cold and flu in terms of being mindful about it and like I had it the first time and I was totally fine. I was fine. The second Like I think I had it twice maybe and, funnily enough, like no, because I also learnt and experimented with a lot of cold and flu remedies. So I'm very much more like a natural, not going to say natural. I prefer natural remedies of things rather than antibiotics where I can. So I got very good at managing when I did have colds.
Speaker 1:Could you recommend any good natural remedies for our listeners?
Speaker 3:yeah, so, uh, I always say like from an anti-inflammatory or if you have colds and flu. So I always make like a um, a brew, which is like ginger lemon, a heap of garlic and really good quality honey. Um, that's what I'll make and I'll just drink that, like a couple of cups of that a day until it's gone.
Speaker 1:But the other really big one, your breath, yeah your, I bet your breath wouldn't stay so good, gross it's gross, but it works. Hey, sorry is it true as well that some, if you wear like garlic or onions in your socks like that, can help. Has anyone ever heard that one before I?
Speaker 3:have tried that. Actually, I tried it in my socks when I was sleeping on the web sorry, my so sorry, so so.
Speaker 1:So what were you saying?
Speaker 3:I said I have tried the um, the onions in socks when you're sleeping um, because one of my clients actually recommended it.
Speaker 1:But she said also, if you cut an onion and you put it in your room, it's supposed to help clear out like congestion in your lungs did it work I only did it for one night, so I can't give you a proper okay, and we might have to go to the, might have to go to the research on that one. Eh, next time we'll do a research. Yeah, all right, so garlic, garlic onion. What else did you do, ginger?
Speaker 3:Garlic, lemon ginger and good quality honey. Yeah.
Speaker 1:Okay, cool. Where could you get the good quality honey from?
Speaker 3:The Manuka. Oh yeah from a chemist the manuka honey, but it's like mg plus at least 50 and how much are you putting in there?
Speaker 1:like much, much at all per cup.
Speaker 3:I probably put about a teaspoon oh, okay, that's not that much.
Speaker 1:I was thinking you might put in like half a cup or something.
Speaker 1:Okay, that's interesting, that's interesting, that's cool. You know, it was interesting when you and I were talking, before you came on, and I was sharing with you, you know, some names about what we could call the show and all of that type of stuff, and you said, look, can we, you know, instead of using invisible disability, could we, you know, put it as invisible condition? So you know, I'm pretty sure this is the yeah, this is the question. So you know, what are your thoughts? It would look really bad if I got the wrong question for that one, wouldn't it? What's your thinking behind that? And the reason being, we've actually had um, a lot of people in certain um situations say, look, you know, we'd prefer to use this type of words because, kev, I'm sorry, I'm afraid, on john, what was um, what was um, uh, what, what was her name? The one who was doing the stuff with the research on drug use in aged care homes?
Speaker 2:Oh, that was Erin Erin. Yeah, yeah, Erin Erin.
Speaker 1:Remember she was talking about. What was she talking about? Like, not referring to people, say, as like drug addicts.
Speaker 2:Yeah, rather than you know, you know, rehab, it was harm reduction, I think. Yeah, so she was focused on harm reduction rather than um, complete abstinence, or or, uh and and. But not just that, but also, even if it was complete abstinence, it was the idea of harm reduction in the, in the approach to people, uh, who are having these issues with substances, and that's part of that involves simply the language you know.
Speaker 1:So you wouldn't be say like the drug addict, you'd be like a drug user.
Speaker 2:Was it drug user User yeah, yeah, yeah, and you wouldn't say a drug abuse or something like that. Well, and there's just you know, I know, within the neurodivergent community, there's a lot of conversation around this. Some people don't like the term disability, some people do. Some people like to say it's a superpower, some of us don't, and it's a very nuanced conversation and I think different people are entitled to different opinions on this. But what would be? What's your personal take on this? Why do you prefer condition? What's your personal take on this?
Speaker 3:Why do you prefer condition, yeah, and so when, like when I said this to you, will my like more of my.
Speaker 3:I guess overarching point with this is I'm really mindful around the language that I use about the condition, about the condition mainly, but also for when people have conversations. So even like in the medical sense my mum, for example, when, like very early days, she was like this is the language that we will and we'll like will not use around like Bella um more, because I don't know if you guys have experienced this as well, but some of of the conversations can be very negatively geared and quite heavy and really affect you mentally. So I'm very much a big believer in what's the quote, the words you use become the house you live in. So I'm very much about positive not positive affirmations, yes, but positive language around health, around health conditions, the way that you handle things, what you're doing, like all of that. And so condition or challenge is one that I will often use, but I'm not a fan of like disease or disability or anything like that, because I think it's very negative and heavy.
Speaker 1:That's my point no. No, that's a good point. I like that because, like when you said invisible condition, it just feels like it feels like.
Speaker 1:And like Fodon John said before as well. Right, you know some people like to use the word disability, for example, and others don't, and that's perfectly fine. But I think for us, you know, I don't see myself as having a learning disability. I know I'm dyslexic, I know I'm ADHD. Maybe I've had some struggles, um but um. Personally, I don't like using those terms either, but each to their own, at the end of the day as well absolutely, and I also think it almost it's.
Speaker 3:It's much more empowering. Using positive language, like the way that you personally believe or think about your health and your condition, plays a huge part into, you know, the decisions that you make, the conversations that you have. All of it. So I think yeah.
Speaker 2:But listening to you, you have a realistic positivity. If you know what I mean, it's not. You know increasingly the term toxic positivity is starting to go around. A positivity if you know what I mean. It's not, um, you know there's the increasingly the term toxic positivity is starting to go around a bit. You know where. It's just denial of reality.
Speaker 2:You know toxic positivity, that's sort of like one bad versus a good well, no, where it's like um, uh, being positive, um, to the point where you disregard certain realities that you do need to face.
Speaker 3:Disregard certain realities.
Speaker 2:Yeah, yeah, and you don't sound like that. You sound like you've got your head screwed on right and you're using positivity in the correct way. So it's nice.
Speaker 1:It's nice to see, I can tell you right now you've got your head screwed on a lot better than what I did when I was your age. Yeah, hold on, john. What do you recommend?
Speaker 3:it's so true and I do think like the realism piece is like a big factor. I think you can't live in la la land when you have something like this. It's not something that you can walk away from. It's not something you can pretend you don't have. There are legitimate things that you need to take care of on a daily basis but, for the rest of it.
Speaker 3:Like live the life that you want. Like create the life that you want, and that's what I'm about. Like be the advocate for your health. Work out what works, ask questions, do the research so that you can then make the decisions to you know because, because, like I think you, you sort of almost answered the question before I asked it to you because it's like to sum up, what's the message you'd like to get out to others with your condition or an invisible condition in general?
Speaker 1:could you elaborate on that maybe?
Speaker 1:yeah because you've pretty much just said it, just then. Right. But, like you know, maybe there's other people out there who you know. They and I think as well, like we're talking about before, with um positive affirmation is that the word I'm looking for um, uh, you know, maybe people are seeing themselves as a disability and can't see the positives to it. Like you said, there are a lot of, and don't get me wrong, like Photon, john and myself, we've got some negatives in regards to some of the things we have to live with, but there are so many positives to the things that we're doing One, the podcast, the other stuff we're doing outside, just us in general and the perspective.
Speaker 2:Um, you know that an invisible condition can give you on life. You know that other people don't get the opportunity to have 100 and like.
Speaker 3:Just on that before I answer this question, I think I'm not going to say that this is like complete.
Speaker 3:It's been a big factor in shaping how I am as a person and the way that I think about all these things, like the perspective that I have now is drastically different to if I had lived a like a different life you know, I can't say what it would be because I haven't lived that life but it definitely gives you perspective into the challenges that people live with, but also the mindset required to to live with something like this and knowing that you are going to have bad days, but not getting stuck in them.
Speaker 3:So one thing I always say is like know that you will have bad days, but choosing like what's one thing that I can do today that's going to make me feel better, and it doesn't have to be something that you should do. It just has to be something that, like you want to do and you can do, like the list of things that to be grateful for, I can almost guarantee you will be a lot longer than the things that aren't so great in your life health condition or not, you know. So I guess my message would be sorry, did you want to ask me?
Speaker 1:No, no, no, no, keep going.
Speaker 3:I was going to say is like being the advocate for your own health. So, like the information that you're given, if you are given a diagnosis, know that this is general and that this may not be your reality. So, again, ask all of the questions, do your research, find a community that is supportive and will share stories and hold space for you, and then go about creating the life that you want based on all of that.
Speaker 2:Hold space for you. I love that Because.
Speaker 1:I think a good example of that is that you know, if your parents had have listened to, say, the doctor and I'm sure your parents did listen to the doctors, but you would have been in there every two weeks where they looked outside of that and did the research, and you know, they've got this fantastic human who's kicking goals and is going to continue to kick goals for a long time to go yet.
Speaker 2:Yeah, Can I say you know, will you're talking about how someone Bella's age wouldn't often have their head screwed on quite so straight. I think that speaks to. I think it was just me, but that speaks to the well, yeah, well, us both of us, I'm sure, did not have shit together like Bella does, but I think that perspective we're talking about, that this kind of thing can give you, would be part of the reason for that you know, looking at life through a whole different lens to everyone else.
Speaker 3:Yeah, reason for that, you know, massively looking at life through a whole different lens to everyone else. You know, yeah, and like what you said, like parents wise, I am so unbelievably grateful that that was the path that they chose, because we have fought like hell to create the life that we have and I think if you're willing to put in the work, you can do whatever you want you know, yeah, great, and that could go with anything.
Speaker 1:Business Absolutely. And sometimes you probably see people like yourself and people like Kevin, I mean Ferdon John and myself. Sorry, ferdon John, I've been doing too well with your name today have I baby, I've been trying, man I've been doing too well with your name today I've been trying, man, I've been trying.
Speaker 2:It's sometimes Sorry, just quickly to our viewers out there, my art name for everything that I do with music and everything else is Photon John. It's a stage name. My name's Kevin so don't get up with it. I had to ask what the whole thing was. I'm trying to bring it all under one umbrella to make it less confusing, but I might be making it more confusing.
Speaker 1:But when you have known someone for as long as I've known Photon John for, and I've known him as Kev it's very difficult to like try and go back to it when you're doing it once a fortnight.
Speaker 2:Yeah, exactly so. Yeah, to like try and go back to it when you're doing it once a fortnight? Yeah, exactly so. Um, yeah, we're taking away from.
Speaker 1:We're taking away from bill yeah, yeah, sorry, but when I was gonna sort of finish on type of thing, was that? Like you know, I think sometimes we see that people who have had that struggle in early parts of their life can can almost be a really good thing for when they want to go on to say business or become elite sports people or whatever. That is that sometimes the what do you call it like the strength, yeah, yeah, yeah, something like that that's going to help you to thrive later on in life, type of thing. So sometimes everything happens for a reason.
Speaker 3:Sometimes it's just hard to see that oh yeah, and I think it's very much character building. You know the, the characteristics that you have to develop sometimes to to deal with those things and deal with the mental challenges that come along with that. Like, you're very resilient, and it takes a lot of, I think I would say, bravery and courage to step away from what's always been done or what you've been told to do, to create something different.
Speaker 1:Yeah, totally. There's so many people who and I think as well it's a good point there, especially when you're trying to do something different. So many people are used to what? To one way of thinking, doing things. So when you're trying to do something a little bit different, people may look at you as weird. But if you keep persisting towards that and we're sort of finding that with Neurodiversity Academy you will start to get your tribe behind you and others will start to see that, and then people will see that there's a whole bunch of people behind and then they'll go oh my God, yeah, now I get it, type of thing.
Speaker 1:So it can just sometimes take time. But, Bella, thank you so much for coming on today. You are a legend, but you know, if people want to get in touch with you and the awesome work that you're doing, where can they find you?
Speaker 3:Yeah, so I will send across the links, but my website is probably the best place to access me. I believe on there is like like my email and my Instagram.
Speaker 1:So what is your email address? I'll see if I can type it in.
Speaker 3:Do you want me to put? Oh, can I put it in the chat?
Speaker 1:Yeah, put it into the chat and then I can put it up on the screen and I'll read it out, so all of our listeners can listen to what we're saying.
Speaker 3:There you go, all right.
Speaker 1:Cool, cool, cool, cool, cool. All right, so that's your email, correct?
Speaker 3:That's the email, that's the Instagram.
Speaker 1:Oh, okay, so here we go. So here we go. Let's see if I can get this happening. All right, so, um, oh, no to email bella. Go to hello at halo effectcomau correct yep nice, and if you would like to connect with bella on uh, hang on.
Speaker 3:Instagram.
Speaker 1:On Instagram. There, hang on, let's see, you've got to remember I'm not like a speed we need, like a producer, photon John, who can like get all this stuff happening.
Speaker 3:So if you want to check, out Bella's Instagram account.
Speaker 1:Go to at the halo effect underscore instagram no, it's just double underscore double underscore okay double underscore. Okay, because I would never pick that up. Okay, cool. And then, last but not least, let's get the um website website here and I might spell that out for anyone who is listening. Okay, and if you want to go to Bella's email address, it is wwwhaloeffects. So H-A-L-O-E-F-E-oeffectscom, c-o-m dot A-U. Yeah, pretty awesome, yeah, amazing. What did you think of that? One Fade On John. It was great.
Speaker 2:Very quick personal anecdote. My friend in the 90s. Her name was Lily. I called my first band actually Lily's Wish after her. She unfortunately didn't survive and had a really hard time. It's been personally a little bit moving to talk to someone like yourself and see you thriving physically as well as mentally so much it's been really awesome.
Speaker 1:Totally, totally so. Thank you so much for coming on today. It's been really awesome. Totally, totally so. Thank you so much for coming on today. It's been so grateful. We're so grateful to hear your awesome story and for any of our listeners who haven't already done so, please subscribe, like and follow to all of our social media platforms. My name's Will Wheeler, Join with my main man, Fodon John, and this is NeuroDivergent Mates. Till next time.