429. The reality of chronic illness in your 20s ft. Nikki Lilly

Living with a chronic illness in your 20s can feel like carrying an invisible weight that nobody else can see. Beyond the hospital appointments, surgeries, medications and diagnoses, there is a hidden psychological burden: the anxiety, grief, uncertainty, identity struggles and resilience required to keep moving forward when your body feels beyond your control. In this week's episode, I sit down with content creator, advocate and broadcaster Nikki Lilly to discuss what it's really like growing up with a rare medical condition, navigating facial differences, online bullying, and building a meaningful life despite constant uncertainty. We discuss: The hidden psychological impact of chronic illness Medical trauma, PTSD and the long road to healing How chronic illness affects your relationship with your body Online bullying, discrimination and appearance-based judgment Plus her time at the Oscars and her vision for her future Happy listening! Watch on Netflix: HERE https://netflix.com/thepsychologyofyour20s Listen to Live A Little: HERE https://open.spotify.com/show/7sBLnc4qHUaLvm06zWhh12?si=90f0afbb8fab4446 Follow Lilly on Instagram: @nikkililly https://www.instagram.com/nikkililly/?hl=en Follow Jemma on Instagram: @jemmasbeg https://www.instagram.com/jemmasbeg/?hl=en# Follow the podcast on Instagram: @thatpsychologypodcast https://www.instagram.com/thatpsychologypodcast/?hl=en# Subscribe on Substack: @thepsychologyofyour20s https://substack.com/@thepsychologyofyour20s For business: [email protected] mailto:[email protected] The Psychology of your 20s is not a substitute for professional mental health help. If you are struggling, distressed or require personalised advice, please reach out to your doctor or a licensed psychologist. See omnystudio.com/listener https://omnystudio.com/listener for privacy information.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

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• 0:04Speaker 01

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• 1:04Jemma Sbeg?

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• 2:30Jemma Sbeg?

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• 3:15Jemma Sbeg?

  It is so great to have you here back for another episode as we, of course, break down the psychology of our twenties. Today I have such a special guest episode for you. One that goes places we've never been before on the podcast. We are talking to somebody who has spent most of her life navigating a chronic illness, being in the public eye. And just learning how to exist in a world that can be very cruel to people who look different. She was diagnosed at just six years old with a rare medical condition. Her story is one of amazing power, resilience, creativity.

• 3:52Jemma Sbeg?

  You may know her from her modeling work, her advocacy, her behind the scenes content at the Oscars, on runways, film premieres, amongst many other things. Welcome to the podcast, Nikki Lilly.

• 4:04Speaker 05

  Thank you. I was just like, that was the most incredible intro.

• 4:08Jemma Sbeg?

  Really?

• 4:08Speaker 05

  That was amazing.

• 4:09Jemma Sbeg?

  Okay, I honestly, thank you for saying that because I always like to make sure our intros just cover every amazing dimension of somebody.

• 4:16Speaker 05

  You did. That was incredible. Thank you so much for having me. I was just saying to you before we started, I've been a fan of yours for so long. So this feels insane.

• 4:24Jemma Sbeg?

  Oh my God. And the fact that you found me on Substack is crazy.

• 4:28Speaker 05

  No, honestly, as soon as I joined Substack, just as like someone that wanted to get more into reading and is really introspective and over thinker, I was like, okay. Go to Substack and your Substacks were literally the first thing I was recommended. So it was meant to be.

• 4:41Jemma Sbeg?

  I think it was.

• 4:44Speaker 05

  Full circle, what can we say?

• 4:46Jemma Sbeg?

  I know, well, full circle, but like in the opposite direction, where I feel like this is what most people know me for. And the fact that you found me on my Substack, where like I'm a little bit more vulnerable.

• 4:54Speaker 05

  No, I love it.

• 4:55Jemma Sbeg?

  Yeah, that means a lot. Um, I always forget to get people to introduce themselves. I always just jump into the question.

• 5:01Speaker 05

  No, same, same.

• 5:02Jemma Sbeg?

  Briefly introduce yourself. Who are you? How do most people, how might people know who you are already?

• 5:08Speaker 05

  So I'm Nikki. Most people know me as Nikki Lilly online. Um, and I started making videos, like you said, um, around eight years old. And it all came from me being diagnosed with a condition called AVM at six. And I was a super active, chatty, outgoing child, had to give up all of the things I loved. Um, and that made me happier as a six year old and my life was very empty. It was very lonely. Um, and so YouTube became a way for me to connect to the outside world. And so I would watch videos from my hospital bed and almost felt like I was friends with these people I was watching for like twenty minutes. I could escape from treatments or hospital monitor sounds or whatever it was.

• 5:51Speaker 05

  And so one day I asked my mum and dad if I'd be allowed to post a video on YouTube and they're obviously apprehensive. Looking back, me being eight years old is actually insane. Um, but I think they understood it was like the exception to the rule because I needed something. And so it became my project for myself, something to put my energy into that was mine, that helped me regain control. Um, and to focus on outside of what I was doing. So that happened when I was eight years old and now I'm twenty one. And since then, I've done advocacy work, I've spoken at the United Nations. A lot of my, it's funny because when I first started making videos, I didn't address my condition at all for like three years.

• 6:32Speaker 05

  It was just kind of like a world in which I wanted to exist without my condition being a factor because it had taken up every part of my real life. Um, and so it was just me showing my love of makeup and like, you know, baking and things that. I was finding as I was diagnosed to put my energy into my time into. And so that's kind of how it all began. It was not something where it like boomed from the beginning. Um, but as I posted more on YouTube, I started to gain a following and started to do some work on TV.

• 7:05Jemma Sbeg?

  Hmm.

• 7:05Speaker 05

  Um, and now I'm here. That was like the longest intro to myself ever. That was not short at all.

• 7:10Jemma Sbeg?

  Oh, I think that was, I feel like there's a lot more that you could answer.

• 7:13Speaker 05

  Yeah, I know. And I was like, let me just stop now.

• 7:15Jemma Sbeg?

  Yeah, don't worry, I've got, I've got a lot of follow ups.

• 7:18Speaker 05

  Yeah.

• 7:21Jemma Sbeg?

  First follow up, what YouTubers did you watch before you started posting? Do you remember?

• 7:25Speaker 05

  Oh, my god, of course. It was like Zoella, obviously, like all of the Brit crew, they call it. So it was like Zoella, Alfie, Tanya Bar. Tanya Bar is a funny one because I recently, like, well, actually a couple of years ago, met her. We were in the queue for the same event. And um, you have to like queue up for the carpet. Um, and she started talking to me first. And in my head, all I could think was, oh, my gosh, little Nikki would be dying right now. Like, I bought her makeup line, like. Li- literally that whole group was obsessed with them. And so we talked for like twenty minutes. I didn't actually even tell her my name. We were just talking. And then she kind of left and then I didn't see her and she'd followed me, like, straight away after.

• 8:07Jemma Sbeg?

  And you were like.

• 8:07Speaker 05

  I, yeah.

• 8:08Jemma Sbeg?

  Oh, my goodness.

• 8:09Speaker 05

  Honestly, especially when, I'm sure you feel that same way, when something happens that you know your younger self would just die over. It's the most full circle thing. So I would watch them. I also would watch a lot of like American beauty gurus.

• 8:21Jemma Sbeg?

  Bethany Motor.

• 8:22Speaker 05

  Oh, my god, Bethany Motor, Michelle Pham.

• 8:26Jemma Sbeg?

  Yeah.

• 8:26Speaker 05

  Um, like Tyler Oakley, Joe Grisaffa, like all of that group, Troye Sivan before he was like singer Troye Sivan. No, literally, all of them. I was just obsessed. I'd watch like all of their vlogs at VidCon and just.

• 8:39Jemma Sbeg?

  And it'd be like, you know what I remember?

• 8:41Speaker 05

  Oh, my god.

• 8:41Jemma Sbeg?

  We had actually Auden Rose, I don't know if you know who that is, on the podcast the other day. And we were talking about how. Like, you would watch the same video by like seven different people and it was literally just the same vlog of the same stuff. Just different angles and you'd be like, load them up and you'd be like, and that one next. And like before you go to school, I was like, actually the best.

• 9:01Speaker 05

  I was obsessed, like, especially with Zoella. I remember doing like reviews of her new like collections on my YouTube channel.

• 9:07Jemma Sbeg?

  On YouTube.

• 9:07Speaker 05

  I was so obsessed with her.

• 9:09Jemma Sbeg?

  Full circle.

• 9:09Speaker 05

  Yeah.

• 9:10Jemma Sbeg?

  Um, let's talk about AVM.

• 9:13Speaker 05

  Yeah.

• 9:14Jemma Sbeg?

  Can you talk about what it's like to have it, but also for people who may not know what it is?

• 9:19Speaker 05

  Mm hmm.

• 9:20Jemma Sbeg?

  What's a little brief overview that they could understand?

• 9:22Speaker 05

  Yeah, so I was born with my A V M and you have to be born with an A V M, but it can become active at any age. So someone could live up until twenty one, which is my age now, and and then it could be triggered and till then never know they have it. Never have any signs, never really show up on scans unless they were kind of looking for it. And so till I was six years old, both sides of my face looked the exact same. There was no inkling that there was anything wrong with me. Um. And then at six years old, I started having veins and swelling appearing on the right side of my face. Didn't know what it was, didn't think much of it, but we went to the doctor. The doctor very quickly referred me to another doctor and then ensued a bunch of tests and scans and just hospital stuff and appointments.

• 10:07Speaker 05

  And then after a couple of months, it was very quick turnaround because everyone was kind of like, what is going on? Um. I was told um with my parents sat in kind of a dingy hospital room that I had an A V M. So an A V M is basically an abnormal connection between your arteries and your veins. Um. So all over your body, you have arteries, veins and capillaries. And capillaries go in between your arteries and veins to balance out the high and low flow pressures between them. But when you have an A V M, your capillaries basically aren't formed in the places that they need to be. So your arteries and veins collide directly into each other and tangle. So it's an abnormal connection.

• 10:45Speaker 05

  And because of that, there's a buildup of pressure from the blood vessels, which causes pain, swelling, appearance of veins, but also the worst part for me and people with A V M's is bleeding. So you can have life threatening bleeds because of the buildup of pressure. It's almost like a pressure cooker. Where like there can be a buildup of pressure, then that blood vessel is just ready to go. And then you can have like a really bad bleed. So I was in a coma when I was thirteen because of.

• 11:12Jemma Sbeg?

  My goodness.

• 11:13Speaker 05

  Yeah, for eight days because of a bleed so bad. Yeah, so I've had a lot of like near death experiences. And I think that's what's crazy is I think a lot of people on social media. I mean, if you followed me for a while, you'll know kind of as much as you can, the depth of what I've been through, like physically. But a lot of people just know me from my appearance and not like the physical side, because I share it, but I don't. You know, I'm not like pulling my phone out when I'm in the emergency room or I'm in a hospital appointment. So what they see is more me talking about like my appearance versus the physical side that affects me. You know, day to day, like I every Wednesday or every other Wednesday have to go and see my nose doctor. So he can check if there's any blood vessels that need to be, you know, treated so that I don't then start having a bleed.

• 11:59Jemma Sbeg?

  Um.

• 11:59Speaker 05

  So it's always, you never feel like you're stable. There's no sense of stability when you have an AVM and currently there's no cure. Everything's kind of trials or I've been on three trial drugs, none of them work for me. I've had ninety eight surgeries to just try and maintain my symptoms. Um, for four years, me and my parents used, my parents used their savings to um. Get me treatment in America for four years, every six to eight weeks.

• 12:26Jemma Sbeg?

  Um.

• 12:26Speaker 05

  So my life has kind of become about. Like treat, look and repeat and hospital. And when I was younger, especially hospital, we talked about it as if it was my second home. And I've always kind of struggled a lot with like my relationship with my body, because from a very early age, it's kind of given over to doctors and. Stitched up, cut into, um, it didn't feel like mine. So for a lot of my life, I haven't really had autonomy over my body, which is been a really hard thing, because I think when you're younger, like. You know, you're trying to find yourself and find who you are and have a sense of self and identity. So when like your body, which is kind of the biggest thing you have that's with you at all times.

• 13:08Speaker 05

  It's kind of being given over to these other people and you know, your life becomes so out of control so early. It was incredibly difficult. Um, yeah, I think that's the thing with dealing with an AVM is that it's. Or any chronic illness where there is no end in sight, there's no cure. It's so hard because you just feel like a duck that's just kind of trying to tread above water. And you never know, like I could have a good period for a month and then suddenly like. You know, hell breaks loose and I'm in hospital having nine bleeds a day.

• 13:38Jemma Sbeg?

  Oh my god.

• 13:39Speaker 05

  So I'm, you know, I'm doing things like the Oscars or things like that, but. The anxiety I felt like leading up to the Oscars because it felt like something that was set in stone. And my life is so not set in stone that anything like that, it's like I never get excited for it. Because the nerves of this isn't gonna happen or something's gonna happen that means that this, you know, doesn't follow through. Is so big and has been in my life, that's been the case, that it's very hard for me to look forward to things. And instead be so anxious that it's not even going to happen.

• 14:11Jemma Sbeg?

  Yeah. This is the thing that I was so interested in talking to you about is. The psychological side of a chronic illness and. The fact that a lot of people, as you said, would see, I don't know, a visual difference. And that would be it.

• 14:28Speaker 05

  Yeah.

• 14:29Jemma Sbeg?

  And I think it's so important that you talk about and that you are talking to us about. Know this, all this other side of of it, like this, the mental load of the anxiety that you're explaining. And what really struck me about that was you being like, yeah, all these great things are happening. Imagine not being able to even look forward to the good stuff because of how just stressful that might be.

• 14:53Speaker 05

  Yeah, I've been in and out of therapy my whole life at different things. I'm in therapy at the moment, having E M D R for chronic P T S D.

• 15:01Jemma Sbeg?

  Yeah, how are you finding it?

• 15:03Speaker 05

  It's hard, oh my gosh, it is. I went into E M D R because it kind of felt like the only option. C B T wasn't going to work for me because I knew.

• 15:16Speaker 05

  Yeah, I'm almost too over-therapized, like I know everything, I know. Why things have happened, I know I'm, my mental place is a product of my physical health mostly. And so I know all of that. So that's not going to work for me. I needed to feel like I was doing something that was like. Progress.

• 15:32Jemma Sbeg?

  Mm hmm.

• 15:32Speaker 05

  And an actual tangible thing, because so much of my life has been things that haven't been that.

• 15:37Jemma Sbeg?

  Mm hmm.

• 15:37Speaker 05

  So talking about issues is great and you definitely need to do that, but that's just ruminating. So E M D R for me, I've had fifteen sessions of it. I've got five left. Um, it's a lot. When I fir- when we first started doing E M D R um with my therapist, we actually made a. Like almost a timeline of all of the um. Traumatic things that have happened to me since I was six years old and it was like two pages long. And it was the most crazy thing to, and we kind of put the dates, although it was a bit blurry and like named each experience. And it was so insane to kind of see your trauma kind of laid out like that. Um, and so then we kind of went through, okay, which one is the worst out of all of the worst traumas?

• 16:22Speaker 05

  And have been targeting that. And it is the most. Kind of the biggest workout for your brain ever. Um, I do think that it's helping. But after I do E M D R, I'm like gone for the whole day.

• 16:37Jemma Sbeg?

  So tired.

• 16:37Speaker 05

  So exhausted. I remember the first time I had E M D R. I literally thought I'd been drugged. I was like, what has happened to me? I can't function. Dizzy just knocked out. Like, I just felt like I wasn't in my body because obviously you kind of. Also dissociate a little bit when you're doing that because you're back in the experience. So E M D R is. Great, because I feel like it's directly kind of attacking certain things that have happened to me. It's hard because I'm also dealing with the reality still in a way. Um, but it means that because you're bringing up like the worst things that have ever happened to you, that you would naturally push back in the back of your mind. You're then kind of, you have your E M D R and then the less rest of your week, you're left with that, kind of just being at the surface of your mind and having to.

• 17:20Jemma Sbeg?

  Yeah.

• 17:21Speaker 05

  Deal with that. So that's, yeah, it's hard. But I'm kind of relieved that I feel like I'm doing something that has like a beginning and an end in a way.

• 17:30Jemma Sbeg?

  Yeah.

• 17:31Speaker 05

  Yeah.

• 17:31Jemma Sbeg?

  I think also like you have been, not to put words in your mouth, but you. Have been in medical institutions for the majority of your life. You have probably an incredible medical, like, A, knowledge, B, dictionary of terms. C, psychological understanding. I'm sure you've met a million psychologists, a million caseworkers, a million social workers.

• 17:54Speaker 05

  Yeah.

• 17:55Jemma Sbeg?

  I feel like for somebody like you, who is incredibly self-aware. It it's something I see with like C V T all the time, where it's just like incredibly difficult to not just hear what somebody has to say and be like, ah, come on, I heard that.

• 18:11Speaker 05

  Exactly.

• 18:11Jemma Sbeg?

  Heard that a million times.

• 18:12Speaker 05

  Mm hmm.

• 18:13Jemma Sbeg?

  Cool. We've got the knowledge. I need to do something practical. I'm so glad that it's working.

• 18:17Speaker 05

  And my therapist keeps catching me out because we'll be going through a memory and I'll say, she'll always stop me and be like, what do you feel now? What do you see now? Um, and I'll start, I can't just say the thing. I have to then analyze the thing and explain it. And she's like, stop analyzing it.

• 18:33Jemma Sbeg?

  Yeah.

• 18:33Speaker 05

  Just stop analyzing, just say the thing and continue.

• 18:36Jemma Sbeg?

  Yeah.

• 18:37Speaker 05

  And I think it comes from like that being, that's the thing is when you're so over kind of therapized and so self-aware. I mean, I'm so self-aware even of my body. I've had to be tapped into it, um, that you do that in general, um, too much. That then I feel like it's almost also me trying to, cause I'm so used to no one understanding that I have to over explain, over compensate, over justify. So I find that I'm doing a lot in therapy. Um, and my therapist is always calling me out, being like, just go with the feeling. You don't need to explain the feeling.

• 19:07Jemma Sbeg?

  Yeah.

• 19:07Speaker 05

  You don't need to make sense of it. Just go with it.

• 19:10Jemma Sbeg?

  So interesting that you said like you're so in touch with your body because probably like you're what mostly your condition would like necessitate that.

• 19:17Speaker 05

  Yeah.

• 19:17Jemma Sbeg?

  Any pain might be incredibly threatening or important to like deal with.

• 19:22Speaker 05

  Yeah.

• 19:23Jemma Sbeg?

  That it's like that even when you're trying to like heal through trauma.

• 19:26Speaker 05

  Yeah.

• 19:26Jemma Sbeg?

  You probably feel that in your body a lot more intensely than most people as well.

• 19:30Speaker 05

  Totally. And it's this weird thing where I I'm constantly kind of in this fight or flight mode where. You know, I could have the tiniest kind of niggle or feeling and I'm like, oh my god, where are my tissues? I'm going to have nosebleeds and that has been the case sometimes because my nosebleeds can just come on out of nowhere. Um. Um. So you're constantly kind of preparing for danger. Um. Your body's constantly in that kind of state, which means that I'm never able to kind of relax or return to a baseline. And so like with my therapist, we've been talking about a lot about window of tolerance. And you know, obviously, the window of tolerance when you have a lot of traumatic events

• 20:11Speaker 05

  or a destabilized kind of nervous system or dysregulated, that your window of tolerance is so much smaller. And you bounce up above it or down below it much quicker. So hyper or hypo arousal. Um. And so for me, I think what's been helpful with therapy is I'm so self-aware. But I also treat that self-awareness as like, I'm very hard on myself. And so what it's helped me with is being able to apply these theories to myself and make sense of them. When a lot of my life has been not being able to kind of put something in a box and make sense of it as just that. Um. Um. Because it's so much and it's so messy.

• 20:52Speaker 05

  Um. But equally, you know, I'm so tapped into my body, but I'm also, I've been through a lot of like dissociation from my body and detachment where it's because it's not felt like mine, it doesn't feel like it's mine. Um. I remember I had a massive surgery a few years ago. It was a twelve-hour surgery. And I was recovering for four and a half months and that was one of the, I mean, the rock bottom of my life, that whole recovery period. And I remember looking at my hands and being like, these hands don't feel attached to my body. Like I felt so outside of my body because so much had happened that it was kind of like, yeah, you need to shut down to just survive through this. Um. But yeah, I think, you know, therapy is one of those things where it's almost like the most important relationship outside of the one you have with yourself to have.

• 21:38Speaker 05

  A good therapist or a bad therapist or psychologist can make or break your experience.

• 21:42Jemma Sbeg?

  Yes.

• 21:42Speaker 05

  Cause I've had some rubbish ones where I'm I go into it instantly and know in my gut, this isn't going to work.

• 21:48Jemma Sbeg?

  How do you, how do you know that?

• 21:49Speaker 05

  It's just a feeling I get. It's almost like, I guess, like speed dating, like or dating. It's that feeling of like. Yeah, this isn't going to work or this, I feel like this could work. Obviously, you know, you can't, you need time to see, but I do feel like. For me, the person matters as much as the therapy. Um, so I feel like. And also, in my life, a lot of doctors, um, for medical stuff. Haven't seen me as a whole person. They've seen me as a problem that needs fixing.

• 22:19Jemma Sbeg?

  I was gonna say, I feel like you would have a good nose for it because you've probably dealt with a lot of. People in this setting, you can tell who has genuine empathy.

• 22:26Speaker 05

  Yeah.

• 22:27Jemma Sbeg?

  Is that, do you think your empathy radar is quite?

• 22:29Speaker 05

  Too high.

• 22:30Jemma Sbeg?

  Too high.

• 22:31Speaker 05

  Oh, my god, in the sense of I'm such a deep feeler and I'm so overly aware of like, there could be a change in energy in the room and I'm like. Someone's angry with me, someone's upset, you know. Um, so I'm so aware of that and I think. I completely understand, especially in a medical lens, that doctors have to detach themselves from their work. I mean, I could never do what they do. Day in, day out, you know, delivering hard news, doing these insane surgeries. And then go home and carry that all with me. Like, you know, you can't do that. You have to learn to detach, same with therapy and therapists and whatever else. But equally. A lot of doctors have kind of seen me and told me through my life from a very early age.

• 23:10Speaker 05

  You're complicated, this is complex, you're a problem, you're an eleven out of ten. And so you apply that to you as a person. Especially when you're so young, um, or you, this can't be fixed. So it's like you're constantly kind of sat in this hospital waiting room. And watching everyone else around you leave the room, but you're still stuck in it because your problem is never solved. And a lot of doctors have kind of seen me as. Yeah, a problem and not as a whole human. They think, okay, we can do this drastic surgery that might help you. But they're not thinking, how is that going to impact my life?

• 23:45Jemma Sbeg?

  Yeah.

• 23:45Speaker 05

  Um, how is that going to impact me as a human? How is that going to impact me as a thirteen year old, fifteen year old, twenty one year old? Who wants to also live as much of a normal life as she possibly can.

• 23:55Jemma Sbeg?

  Yeah.

• 23:55Speaker 05

  Um, and so I think that's been a really hard, like, paradox is that, of course, I need, you know, to have the health support and the medical support, but a lot of doctors have never seen me as a whole person. So it's like, as soon as I leave that hospital, I know that they're not considering what I'm going through outside of the hospital. Like, it's like you get discharged from hospital and it's like, okay, off you go.

• 24:19Jemma Sbeg?

  Yeah.

• 24:20Speaker 05

  But no, then you're, I'm dealing with four and a half months of recovery in my room, not leaving it.

• 24:24Jemma Sbeg?

  And do you think sometimes they see you as like an intellectual problem maybe for them?

• 24:28Speaker 05

  Yeah.

• 24:28Jemma Sbeg?

  Yeah, where they're like.

• 24:30Speaker 05

  You're a challenge.

• 24:30Jemma Sbeg?

  This is interesting to me.

• 24:32Speaker 05

  Or I've had a lot of, which is no problem with that, but a lot of like, um, junior doctors who've come in and they've been like, can they, you know, be a part of this um, appointment so they can see your case and stuff like that. Like, I remember once, when I was younger, going into a doctor's appointment and having about, I think I must have been nine, and having about fourteen doctors surrounding me like that.

• 24:57Jemma Sbeg?

  So, and you were nine?

• 24:58Speaker 05

  Yeah.

• 24:58Jemma Sbeg?

  You would have been, it would have been really scary, especially.

• 25:01Speaker 05

  Know their names.

• 25:02Jemma Sbeg?

  Didn't know their names probably, and then also when most people, and you included, would see a doctor, you'd be like, something's really wrong. Having that many doctors around, you would probably have thought the worst.

• 25:10Speaker 05

  Yeah.

• 25:11Jemma Sbeg?

  God, that's really hard.

• 25:12Speaker 05

  Yeah.

• 25:13Jemma Sbeg?

  Yeah, I can imagine.

• 25:19Jemma Sbeg?

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• 26:03Jemma Sbeg?

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• 26:41Jemma Sbeg?

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• 27:22Jemma Sbeg?

  access to exclusive, one of a kind experiences and opportunities that make membership feel rewarding long before takeoff and long after landing. Because Sky Miles is more than a travel program, it is a membership that moves with you. Fly farther, earn every day, redeem your way and access more. Because when your membership is as unique as you are, there's no telling where your next journey will take you. These days, there are more people than ever telling you how to manage your health. And we've all gone down an internet rabbit hole exploring the latest health trends. Your social media feed is packed with wellness advice, telling you to cold plunge, protein max, detox, track your sleep. But what's actually real? What's exaggerated?

• 28:08Jemma Sbeg?

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• 28:48Jemma Sbeg?

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• 29:29Speaker 05

  Yeah, let's do it.

• 29:30Jemma Sbeg?

  Yeah. Do you want to talk about what it's been like spending so much of your life on social media?

• 29:38Speaker 05

  Yeah, crazy.

• 29:39Jemma Sbeg?

  How is your relationship to it? Changed like before we started, we, the listeners need to know, we were just like chatty Kathys before.

• 29:50Speaker 05

  Oh my god, yeah.

• 29:51Jemma Sbeg?

  It was so good.

• 29:51Speaker 05

  Yeah.

• 29:52Jemma Sbeg?

  Um, and you were talking about how, you know, you started TikTok and you got like a million followers in like a month, but that individual, that younger you who like started it as an escape to now, like how, yeah, how has the relationship changed?

• 30:05Speaker 05

  Such a good question. I mean, it's changed a lot. When I first started YouTube and put myself on social media, there was no part of my brain that was like, this is going to be a job. I need to perform or be a certain way. There was no part of my brain because it's also that innocence still that you have as a child that this is play. I'm gonna do this for fun. Like, you know, this is for me, which all of us as adults, we lose that and that's a lot of what I talk about and just think about in life is how I need to tap back into that somehow.

• 30:34Jemma Sbeg?

  Yeah, with the new podcast.

• 30:35Speaker 05

  Yeah, exactly. Like I talk a lot about how life becomes and think a lot about how life becomes so serious that we actually lose playtime. And if anything, adults need that more than even kids because there's so much more that takes away playtime.

• 30:50Jemma Sbeg?

  We, this, I need, we need to do a whole episode on this.

• 30:52Speaker 05

  Oh my god, I would love that.

• 30:53Jemma Sbeg?

  Deep personal philosophy of mine. I'm glad that you were.

• 30:55Speaker 05

  I would love that. I know, I knew that as soon as we met, we would just hit it off.

• 30:58Jemma Sbeg?

  I love playtime. I, I honestly do so many episodes where like we talk about whimsy and fun.

• 31:04Speaker 05

  Same.

• 31:04Jemma Sbeg?

  How, uh, bingo. But I feel like when we're kids, you were talking about like you started YouTube as like this thing is an escape and also because it was fun.

• 31:12Speaker 05

  Yeah.

• 31:13Jemma Sbeg?

  And now it's your job. Do you, you do love it less?

• 31:16Speaker 05

  I do. If I'm going to be honest, I miss, I mean, social media and I'm sure you can agree, has changed so much as a landscape. It's become, in an amazing way, it's become very legitimate now and it's become something that you can do, you know, financially. Um, like I remember when it was like the Zoellas and stuff, how they kind of still weren't really taken that seriously or like, it was like, why is she so successful? I don't understand. Whereas now it's, you know, it's one of the biggest markets in the world, social media. But I miss the, I think this also just happens with growing up. You become more self-aware of yourself and more aware of how people perceive you and how you perceive you. Um, and our external opinions and voices and that is really difficult.

• 31:58Speaker 05

  And also when you become your work, it's this really hard thing where.

• 32:04Speaker 05

  Where does Nikki Lilly start and where does Nikki end? Um, and Nikki Lilly obviously is still me. My name is Nikki, my ni- middle name is Lily. But in a way, I've had to create a little bit of distance from both in order to hang her up at the end of the day and still be me. Um, Nikki is me, but it's also like to others, an inspiring, more inspiring version of me. It's a more aspirational version of me, more positive, as all of us are on social media. It's just a heightened version. And it's been incredible because honestly, I don't think there's many jobs, if any, I could have had with my circumstances, except social media. So in that way, it's been, you know, such a gift and I'm so, so lucky because having such unpredictable health.

• 32:49Speaker 05

  Um, you know, tomorrow I could be in hospital. I just don't know. It would be incredibly hard for me to maintain a job for like a company and normal nine to five. Um, and so in that way, I'm so grateful that I've been able to alongside my condition do and have a job. Because that's what a lot of people with disabilities struggle with, is that, um, a lot of people have to rely on others for that unfortunately. And so I think how social media has changed for me is that I still absolutely love it. I think the hard part for me now is because I'm such an over thinker, because I'm such a perfectionist, as we've been talking about, and I lack so much control in myself. I try and find that even more from my job.

• 33:31Speaker 05

  Um, because also my job is me, so it links back to that. I'm sure you feel the same. And so the hard part is how do I make videos that still fulfill that younger part of me that is just for fun? But also, how do I make videos that perform well for my job? And that is the paradox that I deal with every single day.

• 33:53Jemma Sbeg?

  Yeah.

• 33:53Speaker 05

  Yeah, I'm sure you feel the same.

• 33:55Jemma Sbeg?

  Yeah, I do. And it's it's this weird, it's just such a weird thing where you're like, I wanna keep parts of me private. But I also know that like, we got into the stage of social media where the only thing left that people care about is just like extreme vulnerability.

• 34:09Speaker 05

  Exactly.

• 34:10Jemma Sbeg?

  Because they're like, I've seen it all, I've seen it all. And we're like, getting to like, like, I feel like like digging down into what everybody wants, like the most vulnerable nugget of truth about you for them to consume. And sometimes I'm like, I don't really wanna do that. I that's why I like don't have TikTok, cause I was just like, I just can't give over every single part of my life to an audience.

• 34:28Speaker 05

  Yeah.

• 34:29Jemma Sbeg?

  Especially since I've spent my whole twenties talking about what it's like basically documenting.

• 34:33Speaker 05

  Chronicled your twenties, it's crazy.

• 34:35Jemma Sbeg?

  I know, like two episodes a week, I talk about myself for two hours a week. It's it's getting a little bit boring at this point, but you know, like.

• 34:41Speaker 05

  Now I get it.

• 34:41Jemma Sbeg?

  Do you know what I mean? Where it's like, there's only so much like you can scrape the barrel. Um. Have you ever considered quitting social media? I know you said it's this it's this amazing job for you. But if you.

• 34:51Speaker 05

  I do have, I think a lot of us, when we hit that burnout phase, and I've kind of been in it recently a lot, if I'm gonna be honest, I don't think I've ever been more burnt out in my life.

• 35:00Jemma Sbeg?

  Really? Okay.

• 35:01Speaker 05

  Yeah, I don't know what it is. I think that I've what's been incredible is me being able to do things like the Oscars, or like in two weeks, I'm going to Cannes Film Festival, or you know, these massive moments, speaking at the United Nations. I've done so many incredible things that I almost then go back to my baseline of life. And I'm like, okay, what do I post now? What do I talk about now? I I I feel very lost in between those moments, even though I know what I need to do, I know what I need to talk about, but it's almost like there's this barrier ment- mentally that I'm also like, I have so many ideas, I have so many thoughts, where do I start? And then that's when I start spiraling because I don't have a very logical brain. My brain goes straight to emotion. So then it's kind of like me being like, maybe I'm just not cut out for this job.

• 35:47Speaker 05

  You know, and then I watch videos on TikTok and it's like, I can't enjoy the videos because I'm just comparing myself to maybe their their engagement, or maybe their idea. Um, and so would I stop social media? I mean, at this point, not in the near future. I still have so much that I want to do. And for me, it's such a special place. I found a community on it. Um, it's given me a sense of purpose. It's given me a sense of control and reclamation of my life. Um, but equally. It isn't a job that has much stability. And so that is the hard part is when in my life I want control and I search for it so deeply. And then when you're you have a job that does not have the stability, I don't go into.

• 36:29Speaker 05

  In an amazing way, I don't have to go into an office five days a week or three days a week. But equally, I don't have to go into an office five days or three days a week. So then what do I do with myself? And I thrive off of routine and structure and stability because my life and my body is the complete opposite of that. So then when you're kind of chucked into this job that is so last minute, that is so unpredictable. That is so reliant on other people, you know, your followers or brands or whatever else it may be. But he's equally so reliant on you because you are the product, you are the thing. Um, and the cog doesn't move unless you're the one moving it with this job. It is so hard to not compare. And I think maybe it's like this delayed burnout where I've been doing this for so long, like.

• 37:13Speaker 05

  I'm only twenty one, but if you can, like a lot of people started social media in Covid, which was kind of the natural trajectory. Now they're doing social media full time. I've been doing it for like over a decade. Um, and so because of that, I feel like I've had this delayed kind of burnout. I've always gone through phases where I'm like, I don't know what I'm doing. I'm really lost. I'm really uninspired. This, that and the other, like we all do with jobs, you know, we always question what we're doing, even if we love our job. We always think like, is the grass greener over here? You know, what should I be doing differently? And it's always great to want to grow. But I feel like I really struggle to um take in where I'm at and be happy with it. So I feel like at the moment I'm having a little bit of like a, what am I doing with my life?

• 37:54Speaker 05

  What do I post? Where do I go? What's important? What do people want from me? And it's almost then like paralyzing because I'm then like, I don't know. Where to go or what to do. And so I will always love social media and even if. You know, a few years down the line, I decide that I want to be less involved in the social media aspect. I would always, I think, want to do something camera facing in some way. I feel like, you know, I've done so much work around advocacy to suddenly kind of, even though that'd be completely fine, to suddenly disappear, I think would be such a shame for the facial difference community. And the, you know, disability community. But there is um a lot of times where I'm kind of like. Is this right for me? Am I doing this right? I don't know what I'm doing.

• 38:36Speaker 05

  So I'm, a couple of weeks ago, I actually forced myself to leave London and I went to the countryside for like a couple of days with one of my friends.

• 38:42Jemma Sbeg?

  I saw that, looked so cute.

• 38:43Speaker 05

  We literally were in like a shepherd's hut cabin in the middle of nowhere.

• 38:47Jemma Sbeg?

  I was like, where is that?

• 38:49Speaker 05

  No, honestly, we went to um the New Forest and it's kind of like a couple of hours outside of London. Absolutely loved it. We went into this small town and there were just donkeys on the pavement, like there were pedestrians. It was amazing.

• 39:02Jemma Sbeg?

  So cute.

• 39:02Speaker 05

  So I I needed that because I think we can get so, it can feel like a rat race sometimes in this job. And especially when you've been, I've been through a lot, it becomes a rat race and then some with all of the other stuff I've got on top. Um so I absolutely love what I do and I'm so grateful for what it's given me. You know, the fact that I went to the Oscars this year is insane, like. Could have never, ever, ever pictured myself in that room. But equally, I do all of these amazing things and then I kind of go back to reality and I'm like. I don't know what to do with myself now because you're so kind of consumed when you're in the moment of that thing. And then you go back to baseline, I come back to London, I go back home, go back to my normal.

• 39:44Speaker 05

  And I'm so happy showing my normal. My normal has always actually been what's resonated most with people was my reality of my life. But then I'm like, where do I, what is the balance, you know?

• 39:55Jemma Sbeg?

  It sounds very like Golden Handcuffs vibe where it's like, this is a great job, dream job.

• 40:00Speaker 05

  Yeah.

• 40:01Jemma Sbeg?

  I'm like supporting myself, I'm going to these amazing things, but also like, God, sometimes I would like a break.

• 40:08Speaker 05

  Yeah.

• 40:08Jemma Sbeg?

  And the thing with social media is like, there is no break.

• 40:10Speaker 05

  Yeah.

• 40:11Jemma Sbeg?

  Cause that's the job, right? That that is the job. Can we talk about your comment section for a second?

• 40:16Speaker 05

  Yeah. Oh, my comment section.

• 40:19Jemma Sbeg?

  There was a video that you made last year.

• 40:22Speaker 05

  Mm hmm.

• 40:22Jemma Sbeg?

  That it was like a a trend of people in your comments uh of cropping cropping your face and only showing. One side of your face, yeah, and then essentially like flipping it and showing your face without.

• 40:36Speaker 05

  Using A I to literally ask, like prompt it to do that.

• 40:40Jemma Sbeg?

  To like remove.

• 40:40Speaker 05

  Yeah.

• 40:41Jemma Sbeg?

  To remove half of your face, to remove your visual differences.

• 40:44Speaker 05

  I'm still getting it today as well.

• 40:45Jemma Sbeg?

  Really? God, people are awful. Um just how does it feel when people do that?

• 40:52Speaker 05

  It felt so dehumanizing. Um it was so.

• 40:58Speaker 05

  Weird, because also it was on a video, that was just a trend. It was a photo of me when I was younger and then you swiped and it was a photo of me now. And I think I got tens of thousands of comments all of a sudden of. People, yeah, cropping the fa- photo of me now to just show the left side of my face that doesn't have my condition. Or commenting it and then saying wasted potential.

• 41:21Jemma Sbeg?

  Oh my god.

• 41:22Speaker 05

  Um, oh, the potential she could have had, or Nikki, I've fixed it. Or commenting the photo of me where they'd got the A- like A I, also like. Using A I for such a stupid thing um to mirror my face so that it completely takes away that side of my face of my condition. And then saying, commenting it, saying, you look so pretty.

• 41:44Jemma Sbeg?

  Oh god, that's really sad.

• 41:46Speaker 05

  So sad.

• 41:46Jemma Sbeg?

  That makes me kind of emotional, that makes me really angry.

• 41:49Speaker 05

  Yeah, and it's like I've spent. It makes me emotional. I've actually not felt emotional about it for a really long time, um.

• 41:55Jemma Sbeg?

  It's awful behaviour.

• 41:57Speaker 05

  Yeah, it, I've spent my whole life um trying to accept myself, like, and hating myself, to be honest, like. My appearance, my life, my body, hating it all. No one has been. Out of all of the hate comments, no one has said to me something that I've not said to myself from a young age. Um, I felt so out of control and I felt so angry with myself and my body that it was um almost going against me. Um, and yet I was still having to live with it. My body and my appearance felt like my enemy. And I just couldn't comprehend it. So the only thing I would do is self hate and, you know, all of that kind of stuff, because it felt like control. Like how, you know.

• 42:34Jemma Sbeg?

  Yeah.

• 42:35Speaker 05

  What we all do. Um, and so I've spent my whole life trying to accept the body and the face that I now have. And my new reality and the fact that I don't look like an average person and see that as something that is not a negative thing. And I've internalised a lot of stuff growing up, you know, not looking the same as anyone in a room. Um, constantly feeling like the black sheep or kind of othered and not being able to put in a box and that making people uncomfortable. Being stared at on the street from a very early age and therefore not wanting to leave the house because of that. Being scared of kids my own age that you normally would go outside and play with because they would be the ones pointing and whispering. And so they basically undid all of that self work that I've done.

• 43:18Speaker 05

  And the trauma that I've kind of internalised growing up, undid all of that work I'd done to get through that and heal from that. Just through their comments. And even though obviously I'm so aware. And always tell myself, like, I see hate comments now, I was like, poor you. Like, you must have such a sad life to do that. Like, that's what you're spending your time on. But this felt so personal. It felt di- completely different because you are going to the effort. Of screenshot my face and cropping it and then commenting it and then, you know, captioning the comment or asking A I. You are going through steps to do this.

• 43:53Jemma Sbeg?

  Multiple points where you could say, maybe this is a really awful idea.

• 43:56Speaker 05

  Exactly. You you could question your conscience here. Even if you think that, even if you think, oh, gosh, you would look. So beautiful if both sides of her face look the same, which would be obviously a horrible thing. Why are you commenting it? Why do you think you're doing me a favour? That's what I found so. Confusing and difficult about the comments is everyone was. Structuring it and phrasing things when they were commenting these photos in a way as if they were helping me. And in a way as if it was out of kindness and like they're a good person.

• 44:26Jemma Sbeg?

  Like a compliment, do you think?

• 44:27Speaker 05

  Yeah.

• 44:28Jemma Sbeg?

  The the thing where somebody's like, sorry, I'm like.

• 44:30Speaker 05

  Yeah.

• 44:30Jemma Sbeg?

  Cannot even imagine why you would say that. Cause it's it's not like you can change.

• 44:35Speaker 05

  No.

• 44:36Jemma Sbeg?

  And even if you could. Why? Why would you say that?

• 44:40Speaker 05

  So it's basically like, oh, my appearance isn't good enough for your ideas of what pretty is or what it means to be a human. So you can erase that half.

• 44:48Jemma Sbeg?

  Yeah.

• 44:48Speaker 05

  That doesn't fit your standards.

• 44:50Jemma Sbeg?

  And it's also like, oh, you're not. All we care about is, I don't know, making or thinking of you as beautiful and also ignoring perhaps the side of your of your like. Of your chronic illness that is, as we spoke about before.

• 45:03Speaker 05

  Yeah.

• 45:03Jemma Sbeg?

  Psychologically, physically, emotionally, socially, really intense.

• 45:08Speaker 05

  Yeah.

• 45:08Jemma Sbeg?

  And all they're focusing on is wasted potential.

• 45:13Speaker 05

  Or it was like, um, oh, God knew you'd be too good looking if both sides of your face looked the same, so he had to do that to you.

• 45:20Jemma Sbeg?

  Oh, my God. So when you saw see those comments. Is it rage? Is it sadness? Do you have a sense of like, I want to retaliate? Cause I feel like those would all be very natural.

• 45:34Speaker 05

  And I kind of did retaliate with this one, yeah. I initially was like so confused. I was like, what is going on? Like, how has this become a thing?

• 45:45Jemma Sbeg?

  Just this one post?

• 45:46Speaker 05

  It's just a video, like, it's just a normal video. It's not even addressing my appearance. It's just literally two photos. And it's become a trend. Like, it was, I could not go into my comments without seeing it. And if it wasn't on that video, it was on other videos. Um, and it's like, then I couldn't even engage with people that were being nice and were my normal followers because of that. It was a sea of it. Um, and so initially I was just like, what is going on? Like, I couldn't comprehend it, like, where it had come from, why people doing this.

• 46:14Jemma Sbeg?

  Or something.

• 46:15Speaker 05

  And also, why is your brain going to doing that?

• 46:17Jemma Sbeg?

  People.

• 46:18Speaker 05

  So many people. And I'm sure a lot of them are children, but that is not an excuse. That is not good enough for me. Um, and so initially it was confusion and then it was rage. Um, and I kind of took a break from social media for a week after it started happening. And I sat with it and I wanted a video addressing it, but I really wanted to kind of come back down from all of these really. You know, obviously we would like to react and we would like to kind of do things in the moment. And I was like, I need to give myself a moment to actually work out, do I want to give this time? Do I want to actually make a video addressing this? Because a lot of comments and haters just want your time and want to be recognised. So I was like, do I actually want to give this the time it doesn't deserve? But I thought this is an issue so much bigger than the comments.

• 47:02Speaker 05

  This is um discrimination, um, and it's just not good enough. And so, you know, me being like a patron for face equality and all the stuff I do, it felt like. I would be doing an injustice if I didn't talk about this. This is such a bigger issue than just me.

• 47:20Jemma Sbeg?

  Yeah.

• 47:21Speaker 05

  Um, and so I did address it and it was kind of a lot about saying like, kind of, how dare you? And like by you doing this, you are erasing half of me. And actually, my condition makes me who I am. It's not who I am. It's, I do things in spite of my condition.

• 47:36Jemma Sbeg?

  Hmm.

• 47:37Speaker 05

  But my condition is the reason I am who I am today. It's completely changed me as a person. So by your racing, like your racing, what I've been through, you're racing, you know, all of the self-work that I've done in one comment and you don't care.

• 47:50Jemma Sbeg?

  And before you posted that, did you talk to like your friends about it, your parents? And what did they say? Were they prob- I can imagine being your parent, they would be like, oh, don't, we don't want any more of this.

• 48:02Speaker 05

  Yeah, that's, yeah. My mum was quite worried about me posting it.

• 48:05Jemma Sbeg?

  Yeah.

• 48:05Speaker 05

  Because also at the end, I was like, get off my page. And she was like, oh, maybe you shouldn't say that. And I was like, well, no. Get off my page, you know? I'm never very outspoken like that. I've always been like, I never get involved in. Not that this is drama, but I never get involved in controversy. I'm not controversial. I never get involved in drama. And if I speak about issues, it's because they are real issues. Um, and so this felt like it was kind of leaping a little bit out of that box. But it was directly addressing something that I'd been through and an issue today of discrimination, not just a facial difference, but body type, colour, whatever it may be. But in my own way and how it has, you know, affected me. Um, I, I filmed the video.

• 48:42Speaker 05

  I kind of had a few talking points because I was like, I want this to be as dual-ended as possible. I want to adjust the fact that this isn't okay, but also. Kind of be like, get off my page, end it with a positive. Um, so I really wanted to sit there and think like, okay, how do I want to. Structure this. I kind of let myself just speak from the heart, but also I wanted to relay things in the best way I could. Um, and I sent it to my friend, one of my best friends, and she was like, this is amazing. Post it. And when I posted it, I was so anxious. I was like, oh no, maybe I shouldn't have posted it. And that video's got ten million views on TikTok. About me addressing it and thousands on comments on Instagram of people, you know, followers and. People saying, I cannot believe people are doing this. And so if anything actually helped people, um.

• 49:29Speaker 05

  Even now, if people comment that on my videos, other people say, why are you doing this? She said she doesn't like it and this isn't okay. So it's kind of created more allyship, I feel like. And also made people that don't have a facial difference or a bodily difference aware of a really big issue on social media. But it's also, it's down to the social media apps, they're not doing enough. And that's my constant like paradox as well with using social media. So I'm like, you're not doing enough to support people like me.

• 49:57Jemma Sbeg?

  Also, they they make so much money off of

• 49:59Speaker 05

  Yeah.

• 49:59Jemma Sbeg?

  views, likes, engagement.

• 50:02Speaker 05

  Mm hmm.

• 50:03Jemma Sbeg?

  Off of the the reputation that you give platforms of like, you are somebody who goes to the Oscars, somebody who goes to Cannes, somebody who does this. You have legitimized social media as a business that benefits them and then they'll just let people tear into you and do nothing about it.

• 50:20Speaker 05

  So that's also really disheartening with, and I get it's such a big issue and it takes so many people to change almost the most minute thing when it's such a big company or, you know, tech, but equally. When this is such a big issue and it's so rampant in so many ways, not just for people's facial differences. There should be more in place to give people more authority and more control over their accounts.

• 50:42Jemma Sbeg?

  Hmm.

• 50:43Speaker 05

  To be able to enjoy social media and enjoy posting and not fear the backlash, because that is not free speech, that is hate and that is discrimination.

• 50:51Jemma Sbeg?

  Yeah, absolutely. I feel like you've handled that in just like the most amazing way.

• 50:56Speaker 05

  I tried.

• 50:57Jemma Sbeg?

  Yeah, I think you deserve a lot of credit for it.

• 50:59Speaker 05

  Thank you.

• 50:59Jemma Sbeg?

  That's fucking hard.

• 51:01Speaker 05

  Yeah.

• 51:02Jemma Sbeg?

  And you're like, well, you were what, twenty when that happened?

• 51:04Speaker 05

  Yeah, and it's also just such like an unforeseen thing. Like, I've never seen anyone.

• 51:08Jemma Sbeg?

  Yeah.

• 51:08Speaker 05

  Deal with that at such a large scale. So I was also just like, I don't know how to how to deal with this, how to take this, how to respond.

• 51:16Jemma Sbeg?

  Yeah, now that you say it, it's like I've never, I I've never seen anything like that.

• 51:19Speaker 05

  No.

• 51:20Jemma Sbeg?

  And and and obviously, like, people get trolled when they've like in at the centre of drama.

• 51:24Speaker 05

  Yeah.

• 51:25Jemma Sbeg?

  Or something's happened, but for it to be that individual and personal and for you to be going through that at twenty and just being like, fuck.

• 51:34Speaker 05

  Completely like unprovoked, like just a normal, innocent TikTok.

• 51:37Jemma Sbeg?

  Yeah. I'm glad people are are kind of, now they can police it for you.

• 51:42Speaker 05

  Yeah.

• 51:43Jemma Sbeg?

  And now they can be like, get out, get the fuck out of here.

• 51:46Speaker 05

  Exactly, because I think that's the thing is. There is, I feel like we all have a lack of like allyship on social media. And also in in life, I think we all need to be more supportive of one another. And I completely get. Life happens and obviously you're focusing on like your shit and you know, it's always tunnel vision. I'm like that. But you shouldn't have to, like people that are going through the issue, whatever it is, discrimination. Um misogyny misogyny, whatever it is, they shouldn't have to be the ones that are constantly speaking about the issue. It should be the people around them that are less affected by the issue that are also speaking about it and. You know, pushing that along and voicing it and amplifying the voice. So that's what I talk a lot about with, you know.

• 52:27Speaker 05

  Facial difference advocacy is like being an ally is literally just supporting the message and saying like. This isn't okay or why are you doing that? And so that is one beautiful thing about. What has come out of social media is as much as I can obviously say. This isn't good, this isn't good. I obviously spent, obviously spent most of my life on it because it is my job. And so there is a beauty in the community I've built and also. I have gone from being stared at on the street because of my appearance only on face value. Whereas when I was younger, whereas now I get stared at on the street mainly because people recognise me.

• 53:02Jemma Sbeg?

  Wow.

• 53:03Speaker 05

  So that's been a really beautiful shift.

• 53:06Jemma Sbeg?

  And is it nice as well to feel like if somebody's looking at you, you can be like, yeah, it's because of that.

• 53:11Speaker 05

  Yeah.

• 53:11Jemma Sbeg?

  Because of this other reason.

• 53:13Speaker 05

  Yeah, it's not always that. I'm not like, oh, you know me, like instantly. But I do feel like it's beautiful now because they'll make me see my condition and that's. Like how they know it's Nikki. Um but it's like, they see Nikki. And I think that's what's beautiful is I've spent so much of my life only being seen as my condition by doctors, by myself. Um by people on the street, peers, whatever it may be. It's been really beautiful to be able to change that narrative through what I do. Um with especially kids, kids and young people as like I am Nikki Lilly, I'm Nikki, I'm not, oh, the girl with the medical condition.

• 53:49Jemma Sbeg?

  Yeah.

• 53:50Speaker 05

  So when people recognise me now, they're just coming up to me and saying like, oh, I love you, please can I have a photo or just speak to me? And that's been really special because I've spent so much of my life hiding myself. Like even now, I. From very early age, internalised like things to do when I walk past a big group of people. I'll like do this and scratch my head to. You know, pretend that I've got an itch, so it covers my eye when I'm going through a busy place. Like, I still do it.

• 54:13Jemma Sbeg?

  Really?

• 54:13Speaker 05

  Yeah.

• 54:14Jemma Sbeg?

  Wow.

• 54:15Speaker 05

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• 54:21Jemma Sbeg?

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• 55:02Jemma Sbeg?

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• 55:47Jemma Sbeg?

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• 56:02Jemma Sbeg?

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• 56:47Jemma Sbeg?

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• 57:30Jemma Sbeg?

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• 58:48Jemma Sbeg?

  You went to the Oscars.

• 58:49Speaker 05

  I know. Crazy.

• 58:51Jemma Sbeg?

  Crazy.

• 58:51Speaker 05

  Yeah.

• 58:52Jemma Sbeg?

  Do you wanna talk about that?

• 58:53Speaker 05

  Let's do it.

• 58:54Jemma Sbeg?

  When you were there, did you have that impulse?

• 58:57Speaker 05

  I was so anxious about the Oscars because firstly, I was like, I'm not an actor. Don't know why I'm here. Like, I had such bad impulse syndrome.

• 59:06Jemma Sbeg?

  They, but honestly, they invite so many people who are just doing amazing things in all different spaces.

• 59:12Speaker 05

  Exactly. So the Oscars have twenty five spaces to fill every year that are outside of cast, crew and, you know, other people. Um, that go to the Oscars and I was one of those twenty five globally. Um, I was, I think I was the only person from the UK. Um, and so it's like you and your plus one, which is.

• 59:26Jemma Sbeg?

  Who'd you bring?

• 59:27Speaker 05

  Insane. I just brought my manager. Boring. I honestly, I, I, no offence to my manager. I would have loved to have brought like a friend or a family member. But I knew that my manager would be the most supportive in that high pressure environment. Like, he can navigate the room for me. Because I knew that if I bring like a family member or a friend, I'm then having to worry about, okay, where do I need to go? Where is the carpet? Whereas like he can assert that because he is my manager.

• 59:52Jemma Sbeg?

  Job, yeah.

• 59:53Speaker 05

  Yeah, so I was like, you know what, it's probably the best idea to do that. But I brought my best friend with me to L A.

• 59:59Jemma Sbeg?

  Okay.

• 59:59Speaker 05

  So like, the surrounding experience was with her and we went to like a after party together, um, but.

• 1:00:05Jemma Sbeg?

  Which after party?

• 1:00:06Speaker 05

  Elton John's after party. But he wasn't there.

• 1:00:10Jemma Sbeg?

  Wait, what?

• 1:00:11Speaker 05

  I know.

• 1:00:11Jemma Sbeg?

  We can't call it Elton John's after party if Elton John isn't there.

• 1:00:14Speaker 05

  Exactly.

• 1:00:15Jemma Sbeg?

  It's like calling it a Taylor Swift concert and she's not performing.

• 1:00:17Speaker 05

  No, honestly, I think he'd like, we got there pretty late because I had to go back to the hotel and like. Change, cause my, I couldn't have worn that dress to a party.

• 1:00:25Jemma Sbeg?

  The, the white dress.

• 1:00:26Speaker 05

  Yeah.

• 1:00:27Jemma Sbeg?

  Gorgeous, by the way.

• 1:00:27Speaker 05

  Oh, thank you.

• 1:00:28Jemma Sbeg?

  It would have gotten dirty though, I feel like.

• 1:00:29Speaker 05

  Exactly. Even the bottom of it was getting dirty, just moving on the street.

• 1:00:33Jemma Sbeg?

  Who were you wearing?

• 1:00:34Speaker 05

  So it's a brand called Lu Chen. Um, she actually has a dress in the Met Gala this year, which is.

• 1:00:38Jemma Sbeg?

  Whoa, cool.

• 1:00:39Speaker 05

  Um, she turned that dress around in a week.

• 1:00:43Jemma Sbeg?

  Go and look up this dress.

• 1:00:45Speaker 05

  It's mind blowing.

• 1:00:47Jemma Sbeg?

  It's like a wedding dress level of just like crazy couture beauty.

• 1:00:53Speaker 05

  It's, I don't know how she did it. I was kind of anxious because I've never done a custom dress before. And obviously, when you're doing something like that, you have to wear that dress. Someone spent their time and their effort on it.

• 1:01:02Jemma Sbeg?

  Yeah, you can't just go and get something else.

• 1:01:03Speaker 05

  No, but I'm so used to having options and options make me feel safe because I'm like, we've got plan A, plan B, plan C. So for this, it was like I was putting all my eggs in one basket and being like, well, this is what I'm wearing. And because it was the Oscars, I was like, but what if I don't like it? What if it's not perfect? It was perfect. Um, and I couldn't have been happier with it. And because it was custom, I can now keep it. So I can, if I ever have children or like whatever, I can be like, this is what I wore to the Oscars. It's like my wedding dress.

• 1:01:30Jemma Sbeg?

  My god, that is the coolest fricking thing. Because normally you don't get to keep the dress, you have to give it back.

• 1:01:35Speaker 05

  Exactly. Yeah, that's the thing I don't think people get is like everything you're giving back, like if you're wearing a brand.

• 1:01:40Jemma Sbeg?

  Thank you.

• 1:01:41Speaker 05

  No, but yeah, the Oscars was phenomenal. I like, I blacked out. I was so anxious. From the moment I, to be honest, from the moment I woke up that day, I was so anxious. I woke up at seven A M. Because I had to be ready by midday. Really early. The Oscars is like, you have, you're sat by four for the, you know, for the Oscars. So you have to get there. It takes an hour because of the traffic, because they shut down L A.

• 1:02:02Jemma Sbeg?

  Yeah, because where is it? Is it the Chinese?

• 1:02:06Speaker 05

  Um, it's the, I think it's the Dolby Theatre.

• 1:02:07Jemma Sbeg?

  Dolby Theatre.

• 1:02:08Speaker 05

  Yeah, so it's like a big, I mean, the Oscars is a massive deal. But I was so anxious, like I was, we were in the car on the way and I was like, I, I can't do this. Like I was, I thought I was gonna be sick. No, honestly, I, whenever I do something like that, it may seem like can or whatever, it may seem like I'm fine. I am like having the biggest panic attack of my life inside. I, I blackout.

• 1:02:32Jemma Sbeg?

  In the car.

• 1:02:33Speaker 05

  I blacked out from the moment I got in the car on the way there to the moment we sat down, like the whole of the red carpet, I barely remember.

• 1:02:40Jemma Sbeg?

  Okay, the fact that you cannot remember and you. The you looked that amazing? Just cause like the poses you'd like you were like, your body took over and you like.

• 1:02:50Speaker 05

  That's it. I genuinely feel like someone took over my body.

• 1:02:53Jemma Sbeg?

  Oh, really?

• 1:02:53Speaker 05

  Yeah, I don't know what did, but I think my body almost went into like fight, flight or freeze and it's just like, okay, we need to get through this.

• 1:02:59Jemma Sbeg?

  Or fawn, you were like, I know exactly what I'm doing.

• 1:03:02Speaker 05

  No, I I blacked out, but I think whenever something like that happens, all I want is for it to just go well and everything to align. And because there was such a big build up, I knew since November I was going, I actually couldn't, it kind of did for like a wedding where it's like, you know, there's this massive date and this massive day. And you're kind of like, everything needs to work out. So this all kind of goes smoothly. And you know, this could be the one time I do it in my life, like a wedding. So let's, you know.

• 1:03:26Jemma Sbeg?

  Let's make it count. Yeah.

• 1:03:27Speaker 05

  So I was just like, please let everything go well for me for once. And it did. It couldn't have gone better than I imagined. And it was honestly amazing. Like we had such amazing seats and I could see like the back of Timothy Chalamet's head, like, yeah.

• 1:03:40Jemma Sbeg?

  Okay, wait, wait, wait. I have, I have three follow up questions. Are you ready? Number one, what did you eat? What do they give you in terms of food and drink?

• 1:03:48Speaker 05

  Okay, so when you're there in the theatre, they give you a snack box under your, under your chair. And it had like chocolate in it, it had popcorn in it and it has a drink. That's all you get for the ceremony, but it's like the Oscars snack box. Um, oh my God, I found this new chocolate that I was obsessed with and then I couldn't find it anywhere. They're called Snowcaps. So they're chocolate chips covered in sprinkles. And you just like pour them out and they are insane. So I finished like, cause I hadn't eaten all day. Whenever I'm anxious, I don't eat. It's like my body is like, you can't eat till this is done. It's like it just tenses up and freezes up. I'm like the opposite of like a comfort eater. I'm like, I can't eat when I'm stressed.

• 1:04:26Speaker 05

  Um, so I ate at like midnight that night, but so you'd get a snack box and that's just it at the Oscars because obviously you're not on tables. You're like in a theatre, like a cinema. Um, and everyone, it's so funny, like at the front, they're all there eating their snacks in between like the main.

• 1:04:41Jemma Sbeg?

  Like Timothy Chalamet is like eating his Snowcaps?

• 1:04:44Speaker 05

  Yeah, there's this photo of like Teyana Taylor, who's an actress and she's got like her snack box like on the floor and she's like in this like photo. Um, and it just makes it all seem so much more like funny and real. Like, I mean, people gotta eat, you know?

• 1:04:57Jemma Sbeg?

  I would, that is crazy. Cause I was like, I, and it's a long, it's like four hours, right?

• 1:05:00Speaker 05

  Very long, but after they have something called the governor's ball and it's like in a separate room. And that's where the Oscars winners. Get their name engraved on their Oscar, cause obviously they don't know who's gonna win. So they only put it on after. The spread of food was crazy. So they have um Wolfgang Puck, who's a chef, like do all the food. And it was like tables of food. They had a whole dessert table. They had a whole hot food table. They had a whole ice cream section. I feel like I didn't enjoy it properly because I was in this white dress. Like I cannot get anything on this.

• 1:05:34Jemma Sbeg?

  Yeah, you can't.

• 1:05:35Speaker 05

  I've got a full face of makeup on. I've got extensions and this is not the vibe to be like indulging in food.

• 1:05:40Jemma Sbeg?

  Dude, I love how I'm like, so what was, what are you eating? Also, if a man, if.

• 1:05:44Speaker 05

  I mean, I had, I had a little burger. I sat, I sat down. I had a burger and I had a hot dog and I had an ice cream.

• 1:05:49Jemma Sbeg?

  Yeah.

• 1:05:49Speaker 05

  Um, but it was so funny. Me and my manager were like perched on the end of this sofa with like some Oscars winners and the Oscars was just on the table. We just like sat in silence and I was just eating my burger.

• 1:05:59Jemma Sbeg?

  Oh my god. Well, this brings me to my next question. So first question was food was good, but you didn't really have much because you were anxious.

• 1:06:06Speaker 05

  What I had was good.

• 1:06:06Jemma Sbeg?

  Yeah, you had a little, little bit.

• 1:06:08Speaker 05

  Little bit.

• 1:06:08Jemma Sbeg?

  Who were you the most shell shocked to meet?

• 1:06:12Speaker 05

  So I didn't meet that many people because when you do the carpet especially, you're given time slots to go on.

• 1:06:18Jemma Sbeg?

  Yeah.

• 1:06:18Speaker 05

  So it kind of runs like a well-oiled machine. It's like, you know, a smooth run, not like a massive queue of people on the carpet. Um, I was really like excited to meet, you know, Amelia de Moldenberg, who does Chicken Shop Date, because she does the interviews on the carpet. So that was really cool.

• 1:06:33Jemma Sbeg?

  Did you, did you?

• 1:06:33Speaker 05

  I did one. Yeah, I did one, which is really.

• 1:06:36Jemma Sbeg?

  Oh my god.

• 1:06:36Speaker 05

  And like the Academy like posted it and it was crazy. So that was really cool. It was very full circle. Um, but McKenna Grace, who's an actress, um, she's going to be in the new Hunger Games. She's going to be Daphne in like Scooby Doo. She's in Five Nights at Freddy's, so many other things. Um, she's amazing. She's like a young actress. She's nineteen, which is.

• 1:06:56Jemma Sbeg?

  She is also the girl who was like, she was every single younger version of any blonde character in every single movie.

• 1:07:03Speaker 05

  Yeah, that's so true. I think she's been in like the most franchised films ever. Yeah.

• 1:07:08Jemma Sbeg?

  I can imagine. She's crazy talented.

• 1:07:11Speaker 05

  Like the American young actors and actresses, I don't know what they're eating. I know what they're doing. It's just different.

• 1:07:17Jemma Sbeg?

  Yeah.

• 1:07:17Speaker 05

  But she was so sweet. She came up to me and again, I was like, I'm not an actress. I don't know what I'm doing here.

• 1:07:22Jemma Sbeg?

  Hmm.

• 1:07:23Speaker 05

  Like, you know, um, did the carpet. I was so anxious for the carpet as well because it was my first ever carpet in the US, period.

• 1:07:30Jemma Sbeg?

  Hmm.

• 1:07:31Speaker 05

  So I was like, I don't know, with my appearance, I don't know how the photographers are going to perceive me. I don't know how the press is going to take me or respond to me. Um, yeah, I was just very anxious. It was the same when I went to Cannes and I was like, I don't know what it's gonna be like on the carpet. I just, you don't know. It's not familiar. Um, but everyone was so lovely and they had like a crowd of like young people, um, who were like cheering for everyone that came in. So I know what walked in, they were like cheering for me and I just did not know what to do with myself. I'm, I was so awkwardly like.

• 1:08:02Jemma Sbeg?

  And they probably knew who you were as well.

• 1:08:04Speaker 05

  Yeah, but for me, I'm like, oh, they were cheering for everyone. It's not me. You know, I'm just like that. Um, but McCann Gray, sorry, back to that.

• 1:08:10Jemma Sbeg?

  Yeah.

• 1:08:10Speaker 05

  Um, she came up to me, um, and was like, hi, I just wanna say like, I, I'm me trying to do an American accent of her. Um, hi, I just wanna say I love your videos. And I was like. Cause I really wanted to go, you know who I am, but I was like, let me not do that. Let me, you know, act like I can meet her on that level. Um, so I was like, oh my god, thank you so much. You look like a princess, because she did. She had this amazing pink dress on. And then we were just saying it was so hot because that day it was thirty five degrees, see? And we, like, on the, it was outdoors carpet. We were all in like the most heavy dresses, full face of makeup, dying. All of the Oscars workers had like those neck fans around them.

• 1:08:49Jemma Sbeg?

  Oh my god, the Dyson ones.

• 1:08:50Speaker 05

  It was, yeah, it was so hot. So we were like, are you dying? Yeah, are you dying? Yeah. She was so sweet. We spoke for a few minutes and I was like, how, how are you feeling? She was like, I'm really nervous, but I'm excited to be here. Um, I'm just so sweet. And that was something that was so, um. Crazy because I also forget people. Obviously, I know I've got a lot of followers, but you do just same, I'm sure you feel the same. You do just think that is a number. You forget every one of those are people, um, and those people aren't just in the UK or Australia, they are all across the world. So then when she said like, oh, I love your videos, I was like, you're in America, you're an incredible actress and you know who I am. It was this really strange like.

• 1:09:30Speaker 05

  And also the fact that like what, I think acting is such a legitimate job and sometimes doing social media can feel a little bit less legitimate or like real or like important. And so for me, it was this really weird thing where it's like she recognized what I was doing and kind of validated it. And then that gave me a bit of like confidence, I think. Yeah.

• 1:09:48Jemma Sbeg?

  So she was, she was like the one that you.

• 1:09:50Speaker 05

  Sweet, yeah.

• 1:09:51Jemma Sbeg?

  So the Elton John after party was fun.

• 1:09:53Speaker 05

  Very.

• 1:09:54Jemma Sbeg?

  Very fun. Did you see anybody cool there?

• 1:09:56Speaker 05

  So there's a series I'm obsessed with called Tell Me Lies.

• 1:09:59Jemma Sbeg?

  I've heard about this, somebody told me to watch this.

• 1:10:00Speaker 05

  I feel like you should watch it because there's a lot of psychological stuff in it. I feel like you'd be like, yeah, he's got this wrong with him. Like, I feel like you'd really enjoy it.

• 1:10:08Jemma Sbeg?

  Is it like reality TV?

• 1:10:09Speaker 05

  No.

• 1:10:10Jemma Sbeg?

  Oh, okay, okay.

• 1:10:10Speaker 05

  Oh, it's amazing. Um, you should watch it. So some of the cast was there and I wasn't like. I was too, I'm, I'm not, I don't really drink at all, but I was too sober to go up to them and like be like, hi.

• 1:10:22Jemma Sbeg?

  Yeah.

• 1:10:22Speaker 05

  So I was so anxious, I like didn't, you know, drink anything that day. Um, but yeah, we saw them. Who else did we see? Um, we saw, um, Milo Manheim, who's going to be the new Flynn Rider in The Tangled that's coming out.

• 1:10:37Jemma Sbeg?

  Dude, you just got the full young Hollywood show.

• 1:10:40Speaker 05

  That was exactly it. It was all of the young Hollywood, like, people, um, which was really crazy. My best friend, like Alicia, who.

• 1:10:48Jemma Sbeg?

  She came with you, right?

• 1:10:49Speaker 05

  She came with me. We snuck her in. Um, she's obsessed with Milo Manheim. She was like, oh my God, Nikki, Nikki, Nikki. And I was like, go up to him. And then she was like, Nikki, just, he just touched me to get like, to go through the.

• 1:11:00Jemma Sbeg?

  Oh, my God, that's so cute.

• 1:11:02Speaker 05

  Going up to him, she was too scared. So it was basically both of us fangirling. You're like, no, you go up to them. No, you go up to them. No, you go, the whole night.

• 1:11:08Jemma Sbeg?

  And I'm so glad you just like got to have that experience and you were like, the prayers for the health or whatever, like.

• 1:11:14Speaker 05

  That is exactly.

• 1:11:15Jemma Sbeg?

  I don't know if prayer is the right word, but just like the.

• 1:11:17Speaker 05

  Whatever is out there, it was just like everything aligned and I was so grateful. But I do feel like my nervous system was like, what the fuck has like happened today?

• 1:11:27Jemma Sbeg?

  Yeah.

• 1:11:27Speaker 05

  Like, and so the day after, we actually left L A and went to Malibu Beach. And I feel like I needed that to just like re-ground myself.

• 1:11:35Jemma Sbeg?

  Yeah.

• 1:11:36Speaker 05

  Um, to get out of like L A, L A and just be by some nature, like some water and just kind of a little bit.

• 1:11:42Jemma Sbeg?

  Every time I'm in L A, I feel that way.

• 1:11:44Speaker 05

  Yeah.

• 1:11:44Jemma Sbeg?

  And you were in like the most L A situation that you could possibly find yourself in.

• 1:11:48Speaker 05

  Truly, truly.

• 1:11:49Jemma Sbeg?

  The Oscars, other than maybe like a Coachella, a pre Coachella party or something crazy.

• 1:11:53Speaker 05

  It's one of those things where it's like, oh, I imagine doing a carpet in America and that first carpet being like the biggest carpet ever.

• 1:12:00Jemma Sbeg?

  Yeah, it's, I feel like this is the thing, I have a feeling, I have this feeling a lot where I'm like, fuck, I'm doing all the cool stuff when I'm like in my twenties. Like, I need to, I don't wanna slow down, but like, I, I wanna save some stuff for later. I feel like you probably have the same experience.

• 1:12:14Speaker 05

  Do you feel like you are actively present and acknowledging the successes you have?

• 1:12:19Jemma Sbeg?

  No, because I'm the same as you. I'm gonna confidently say that I'm the same as you and then I'm constantly like, okay, what's next? I need to like evolve.

• 1:12:26Speaker 05

  Yeah.

• 1:12:27Jemma Sbeg?

  And I think also, I just like never expected it to be, to ever be anywhere near anyone famous ever. Like I was like, I'm gonna be like a researcher. So.

• 1:12:39Speaker 05

  Yeah, wow.

• 1:12:40Jemma Sbeg?

  Um, I still try and like always just remember myself as like a researcher and somebody who's interested in the science. So.

• 1:12:46Speaker 05

  Because that's the thing, isn't it? When you start, like even for me, when I started becoming aware of the numbers.

• 1:12:51Jemma Sbeg?

  Yeah.

• 1:12:52Speaker 05

  Or of the certain people following me, it was then like, oh, can I put this video out? Because blah, blah, blah follows me or blah, blah, blah might see this.

• 1:12:58Jemma Sbeg?

  I don't ever think about it that way.

• 1:12:59Speaker 05

  Yeah, that's what I, I have had to learn. It's just, you have to just post.

• 1:13:02Jemma Sbeg?

  I know. I, I did it for a while. I think with episodes, I used to really think about it. And now I'm just like, whatever.

• 1:13:09Speaker 05

  Hmm.

• 1:13:09Jemma Sbeg?

  I'm just like, it's, I just like to remember that like this is just a job and I'll have many jobs. So I'll just like do, while it's, while I'm having fun, I'll have fun.

• 1:13:17Speaker 05

  Exactly.

• 1:13:18Jemma Sbeg?

  Whilst it's working, it, it works and then we'll always adapt.

• 1:13:21Speaker 05

  Yeah.

• 1:13:27Jemma Sbeg?

  I've been approaching my health really differently this year. I used to be really focused on maximizing and doing more. And now I'm just realizing that if I listen to what my body needs, I perform way better. And that's why I am obsessed with my Whoop. Truly, you guys, you know, I'm such a data and information driven person. And I love opening my Whoop app and seeing how my sleep, my stress, my strain is correlating with my mood, with my running performance, with how I'm just feeling day to day. I'm not an elite athlete by any means, but I do really benefit. And I also just really enjoy knowing more about my body. And Whoop also gives me these actionable personalized insights

• 1:14:10Jemma Sbeg?

  that have made me more intentional and meant that I make smarter decisions day to day about what I need, rather than just putting my foot on the gas and just going, going, going, going. New members can try Whoop with a thirty day free trial before committing to a membership. That's join dot whoop dot com slash psychology for your free month of Whoop. This episode is sponsored by Gymshark. Gymshark has spent over fourteen years obsessing over gym clothing and the people who wear it. And let me just say, I think we all know, they are very, very good at what they do. No, seriously, their stuff is so good. Their everyday seamless collection is light, it's soft, it's stretchy.

• 1:14:50Jemma Sbeg?

  All of their stuff just looks good on and it's made for people who love to exercise, whatever exercise that is. Lifting, cardio, Pilates, running around campus, maybe just doing errands. Discover Gymshark and find your new favorite gym clothing at gymshark.com.

• 1:15:08Jemma Sbeg?

  No two journeys look alike. That's why Sky Miles is designed to move with you wherever life takes you. Fly, it flies with you on new adventures, family getaways, business trips and the moments that matter most. Earn, it earns alongside your everyday life. It dines with you on special nights out, it streams alongside your favorite entertainment, rides through your daily routines and helps turn everyday moments into something more. Redeem, it helps you redeem for what's next. From spontaneous weekend escapes to the trip that you have been dreaming about, to upgrading your next trip to a premium cabin experience. The miles you've earned along the way can help take you further. Access, and it unlocks access to exclusive, one of a kind experiences and opportunities

• 1:15:53Jemma Sbeg?

  that make membership feel rewarding long before takeoff and long after landing. Because Sky Miles is more than a travel program, it is a membership that moves with you. Fly farther, earn every day, redeem your way and access more. Because when your membership is as unique as you are, there's no telling where your next journey will take you. These days, there are more people than ever telling you how to manage your health. And we've all gone down an internet rabbit hole exploring the latest health trends. Your social media feed is packed with wellness advice telling you to cold plunge, protein max, detox, track your sleep. But what's actually real? What's exaggerated? What's just wrong?

• 1:16:36Jemma Sbeg?

  That's exactly what Health vs. Hype from the American Medical Association. And iHeartMedia's Ruby Studio is here to find out. Each episode, Emmy nominated science communicator Trace Dominguez, who's racked up billions of views across PBS, Discovery Channel and YouTube, talks to health influencers, real people, and most importantly, doctors, to separate fact from fiction. Because when it comes to your health, who you listen to matters. Listen to health versus hype on the iHeart Radio app, Apple Podcasts, or wherever you get your podcasts.

• 1:17:15Jemma Sbeg?

  Growth isn't linear. There's no magic timeline or secret template. And no one understands that quite like Southern New Hampshire University. Because SNHU has online degree programs built for whatever path you are on. Tried college before? Transfer up to 90 credits. And if you're new to this, no worries. Every student gets a dedicated academic advisor. And here's the best part, there's no set class times. So school actually fits your life. Ready to get started? Visit SNHU.edu/psych. That's SNHU.edu/psych. Speaking of which, you have launched a new podcast. I have. Called. Live a Little.

• 1:18:00Speaker 05

  Live a Little.

• 1:18:01Jemma Sbeg?

  Live a Little.

• 1:18:01Speaker 05

  Yeah, we were just talking about it before we started.

• 1:18:04Jemma Sbeg?

  And when did you start the podcast?

• 1:18:05Speaker 05

  So we started it, well, I started it in early December. Um, it's been something that I've wanted to do for a very long time. I was actually supposed to start a podcast pre-COVID. And then COVID happened and then the podcast company was like no longer a thing. And it just didn't end up happening. And also that was like then for COVID was kind of three or four years on and off. And so by that point, my experiences, my perspective, my age had all completely changed. I'm, you know, now out of school, I'm a young adult, like. My self-awareness has changed, my interests have changed, priorities, all of that stuff. So I was like, okay, what does a podcast look for me now? And I'm so someone, and I know you're the same, where I would only do something if it feels right. Yeah.

• 1:18:47Speaker 05

  Um, and I think a lot of social media has become doing stuff just because. Like, oh, I'll just start a podcast, you know, why not, if the opportunity's there? And not to say that, you know, if you wanna do that, go for it. Hmm. But I knew that like the time had to be right for me to start one and I had to have something to say, otherwise, what is the point? I have to like, in a lot of my life, in a great way and in a bad way, I really struggle to do anything if it doesn't feel fulfilling. Or purposeful. And that can almost hit me, you know. Hit me in the bad way because I'm I'm then like searching for that in every single thing I do. And then I'm like, Nikki, this can just be a thing. Yeah. It doesn't need to be like this massive impact or this massive purposeful thing or fulfill you in a certain way. Obviously, obviously, everything should hopefully fulfill you in life that you do.

• 1:19:30Speaker 05

  But for me, the podcast just felt like it was right. And I feel like I was so. Again, with all the short form stuff, all the you need to hook this, you need to optimize that, like we were talking about. I needed something that felt like a breath of fresh air. Um, I needed something that felt like an escapism, back to kind of my YouTube roots where I just sit and talk to a camera. Yeah. Um, and it's that, it's funny, it's like as soon as you have a microphone and a camera in front of you, the honesty is just coming out. Like, I don't know what it is, it unlocks something in you. Um, and so for me, Live A Little was from an idea of. A lot of my life, I have felt very alone and I've not had that friend that gets me. And there's been so many things I ruminate over and I've had no one to discuss them with. So it's my idea of like the listener is the friend.

• 1:20:12Speaker 05

  Um, and we can be that for each other. It's the three A M. Chat you have at a sleepover or the call you have with your friend. Or the deep introspective chats or the like cringe chats or the embarrassing conversations. And so I've done episodes about like romanticizing what alone time looks like and how I've spent a lot of my time alone. So I saw it as a negative thing and. Hmm. How to make it more purposeful now. You know, learning to play again as an adult, like we were talking about and like what that looks like. Um, cause adults, you know, we forget that playtime is so important even more. So Live A Little was the idea that I've lived so much. Life in the things I've done that we've talked about, you know, I was like the youngest person to get an BAFTA and I got an Emmy when I was like fifteen, these crazy things.

• 1:20:53Speaker 05

  Um, but then I've lived so much little life in my childhood. I didn't really have one from six years old at all. I became like sixty when I was six years old. Um, and you know, just normal life experiences or independence I don't have. So it's that idea, but equally just life is short and life can be so serious at times. So we all need to just live a little because. Tomorrow's not promised. So it's just exploratory. It's supposed to feel comforting. A lot of the people I have on, it's like not really about, I've had actors on, advocates on, um, musicians on. Um, and activists and it's mainly about, of course, what they do, but who they are.

• 1:21:29Jemma Sbeg?

  Yeah.

• 1:21:30Speaker 05

  Outside of what they do, it's like meant to humanize people. Because I think so much of life now is either people dehumanizing one another. Social media can feel, you know, so unrealistic and so comparative at times. It's like, let me bring you back to earth. So we'll like sit on the floor. I take my shoes off and it's like. You know, it's very rare you see like actors in that kind of setting.

• 1:21:48Jemma Sbeg?

  Yeah.

• 1:21:49Speaker 05

  Like shoes off, like cross legged on a, like a little sofa thing, you're just chilling.

• 1:21:53Jemma Sbeg?

  It's really good. You should go and watch it. So I should listen to it. With that in mind, what is my final question? What's something really big that you want to achieve in the next ten years?

• 1:22:07Speaker 05

  What a question. I mean, there's so many things. I think. I would really love to have more, based on what we've been talking about, more stability, like personally in my life and in my job. And feel really content and stay safe and stable with it. That's something I'm still kind of, you know. I feel like I'm constantly pedaling on a bike and I need to just figure out like what the baseline is and hopefully be able to roll with that. But outside of that, I think it's, you know, with all of the facial advocacy I do. We still have such a long way to go. Um, it's incredible that I've been able to be in spaces that have, you know, in the past not been that inclusive, AKA the Oscars. Cannes Film Festival, I could go on. Um, and so for me, a massive part of what I do is the advocacy and it's the showing up.

• 1:22:52Speaker 05

  I always say that like one of my biggest dreams is to work with like a game or like a toy. Like a Barbie and create a Barbie with like a facial difference.

• 1:23:02Jemma Sbeg?

  Oh my god, let's make that fucking happen.

• 1:23:04Speaker 05

  I know, that's my dream. I've been like talking about it for so long. I'm like Barbie.

• 1:23:07Jemma Sbeg?

  They just did an autistic Barbie.

• 1:23:09Speaker 05

  It's amazing.

• 1:23:09Jemma Sbeg?

  And I feel like last year they did another.

• 1:23:12Speaker 05

  They did like a diabetic Barbie, like a diabetic syndrome Barbie. So many different ones, a blind Barbie. So I feel like, of course, every facial difference is different. That's the whole point. But I feel like it would be so incredibly special. I never saw myself in anything growing up. And I'm not, it's not to say that only people with facial difference should play with this Barbie, but it's just a Barbie.

• 1:23:33Jemma Sbeg?

  Yeah.

• 1:23:34Speaker 05

  Um, and I think so much of kids learning comes from play, um, and comes from exposure to things. And toys are such an incredible way to teach kids about things before you can verbalize them and make sense of them through words. And so for me, that would be incredible, like either with a Barbie or a Lego or like, maybe it's like a sim character. Sims character that has a facial difference. Like that is my dream is to enter other spaces. Which just make it feel so like mainstream and normal. Um, so I think that'd be an incredible thing. Um, I would love to continue doing documentarial work, like in my past, I did like a lot of documentaries about my life and. Presenting, so I would love to continue doing that. Ever since I was little, like, I mean, I'm definitely not like a.

• 1:24:18Speaker 05

  Look at me, like I'm not that kind of person. I am pretty introverted, but ever since I was little, I loved pretending I was on TV and I loved like. That world and I loved, it was my escapism, you know?

• 1:24:29Jemma Sbeg?

  Yeah.

• 1:24:29Speaker 05

  Because I didn't see myself in toys or TVs, so that would be my world in which I existed. So I'd love to continue with that and hopefully with what I can do. There's power in numbers, so hopefully the more I can do, the more it opens the door to other people being able to do it. I mean, even at the Met Gala this year, there was like a lot more people with disabilities there, which was so incredible to see.

• 1:24:48Jemma Sbeg?

  Who was the girl who was in the Hunger Games, um, Sreeping? I'm terrible with names.

• 1:24:55Speaker 05

  So am I.

• 1:24:56Jemma Sbeg?

  Okay, well, look it up. She was the first of a wheelchair user to attend the Met Gala.

• 1:25:02Speaker 05

  That's what I mean.

• 1:25:02Jemma Sbeg?

  And I was like, that's fucking cool. And also, kinda crazy that's the first person.

• 1:25:07Speaker 05

  I know, right?

• 1:25:07Jemma Sbeg?

  I read that and I was a bit like.

• 1:25:09Speaker 05

  Great, but also what?

• 1:25:10Jemma Sbeg?

  Yeah, I was like, that's, that's. Quite insane.

• 1:25:13Speaker 05

  Yeah, it was even like, um, I would touch on it quickly, but like last September, I walked in Paris Fashion Week. Um, for a, a brand and it was like one of the first times that there's been someone with a proper facial difference walking around Paris Fashion Week. And I like closed it and Vogue Runway was like, Nick, Nikki was the best part of the show and it was like.

• 1:25:36Jemma Sbeg?

  Oh my god.

• 1:25:37Speaker 05

  Craziness.

• 1:25:38Jemma Sbeg?

  What? That's so cool.

• 1:25:40Speaker 05

  But again, it's like so incredible, but also why is this.

• 1:25:44Jemma Sbeg?

  Yeah.

• 1:25:44Speaker 05

  Thing, you know?

• 1:25:45Jemma Sbeg?

  Yeah.

• 1:25:46Speaker 05

  So it's just, I want things to just feel normalized. And I think sometimes people that don't have facial differences or differences, think that we want to be like having special treatment, but it's honestly, we just want to be able to be in the room without it feeling.

• 1:25:58Jemma Sbeg?

  Yeah.

• 1:25:58Speaker 05

  Either tokenized or like we've had to like kick down ten doors while someone else has kicked down or just slight slightly open one to get through it.

• 1:26:05Jemma Sbeg?

  Also, it's so funny to me that it's like, you guys want special treatment and it's like, well.

• 1:26:10Speaker 05

  We just want equality.

• 1:26:11Jemma Sbeg?

  Yeah, it's also just like, but you guys have all the treatments. So like, aren't you getting this special treatment? Like people like me would have, have not, not people like me. People though, like have walked fashion runways, like. Do you know what I mean? It's like, asking for one small thing is not special treatment when ninety nine percent goes to everybody else.

• 1:26:30Speaker 05

  Wouldn't take that much.

• 1:26:31Jemma Sbeg?

  Yeah, exactly.

• 1:26:32Speaker 05

  Things to, you know, change.

• 1:26:34Jemma Sbeg?

  Yeah.

• 1:26:34Speaker 05

  But it's people wanting to make the change.

• 1:26:36Jemma Sbeg?

  Yeah. Yeah, I want to walk a fashion runway.

• 1:26:39Speaker 05

  Oh my god, let's do it. We do it together.

• 1:26:41Jemma Sbeg?

  I think I'll leave it to you. I think, I think you're the professional. I think you're.

• 1:26:45Speaker 05

  Hey, maybe in ten years, you never know.

• 1:26:47Jemma Sbeg?

  Yeah, we'll see.

• 1:26:48Speaker 05

  Yeah, we'll see.

• 1:26:49Jemma Sbeg?

  See. Well, thank you so much for coming on the podcast. Did you enjoy our chat?

• 1:26:53Speaker 05

  I have loved this. This has felt like therapy.

• 1:26:55Jemma Sbeg?

  Oh, I'm so glad.

• 1:26:56Speaker 05

  Best way.

• 1:26:57Jemma Sbeg?

  Oh, good.

• 1:26:57Speaker 05

  Like it's felt so like cathartic and I could talk to you for hours. I just know our brains work in really similar ways.

• 1:27:04Jemma Sbeg?

  Oh my god, I, it, it's actually been hard to not be like.

• 1:27:08Speaker 05

  Yeah, I know.

• 1:27:09Jemma Sbeg?

  Be like jumping in like.

• 1:27:10Speaker 05

  I'm always like that with like my podcast and when I'm talking to people, I'm like, rein it in, rein it in, rein it in. So like, let them finish. Yeah.

• 1:27:17Jemma Sbeg?

  And I also have this terrible habit where I'm like, mhm, mhm, and then.

• 1:27:22Speaker 05

  Because you want to. Like show them you're acknowledging.

• 1:27:24Jemma Sbeg?

  Yeah.

• 1:27:24Speaker 05

  But then you're also like, or I'll be like, yeah, yeah, yeah. And I'm like, just.

• 1:27:28Jemma Sbeg?

  I don't know. People always leave comments on my episodes being like, shut up. And I'm like, I know, but I'm.

• 1:27:33Speaker 05

  No, same.

• 1:27:33Jemma Sbeg?

  I'm just so in like, cause that's what you would do if like it was your friend.

• 1:27:37Speaker 05

  Conversation.

• 1:27:37Jemma Sbeg?

  Yeah, exactly.

• 1:27:38Speaker 05

  Yeah.

• 1:27:39Jemma Sbeg?

  Well, I'm so glad. I'm gonna leave links to Live a Little, everything else. If you enjoyed the chat, even if you didn't, go and follow Nikki anyways, because she has amazing things to say. Her videos are also just cool.

• 1:27:51Speaker 05

  Oh, thank you.

• 1:27:52Jemma Sbeg?

  Um, you should share behind the scenes of just like amazing things that you're doing in life and also the everyday. Don't forget that this episode is also on Netflix. If you wanna go and check it out, you can also follow us on Instagram at That Psychology Podcast. And as Nikki mentioned in the beginning, we have a Substack, also The Psychology of Your Twenties, which you can go and check out right now. Thank you for listening. Be safe, be kind, be gentle to yourself. We will talk very, very soon.

• 1:28:22Jemma Sbeg?

  I've been really trying to prioritize my health in a realistic way this year, and something that has kept me really motivated is my Whoop. I am such a data person, which is why I love Whoop, because I can genuinely see why my body feels differently depending on the day. Why I'm running differently, why I'm maybe less focused. Whoop effortlessly tracks my sleep, it tracks my strain, my recovery, my stress. And most importantly, my overall health. And it just gives me all that data and all those patterns. So I can make better decisions, which includes knowing when to go easy and knowing when to go hard. New members can try Whoop with a thirty day free trial before committing to a membership. That's join dot whoop dot com slash psychology for your free month of Whoop.

• 1:29:07Jemma Sbeg?

  This episode is sponsored by Gymshark. Gymshark has spent over fourteen years obsessing over gym clothing and the people who wear it. And let me just say, I think we all know, they are very, very good at what they do. No, seriously, their stuff is so good. Their everyday seamless collection is light, it's soft, it's stretchy. All of their stuff just looks good on. And it's made for people who love to exercise, whatever exercise that is, lifting, cardio, Pilates, running around campus, maybe just doing errands. Discover Gymshark and find your new favorite gym clothing at gymshark dot com.

• 1:29:44Speaker 06

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• 1:30:12Speaker 03

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