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

An episode of [The Psychology of your 20s](https://invisiblenetwork.ai/podcast/1573710078), 15 Jun 2026, 1 h 12 min.

Audio: https://pdrl.fm/f842d9/podtrac.com/pts/redirect.mp3/traffic.omny.fm/d/clips/e73c998e-6e60-432f-8610-ae210140c5b1/bc44988a-a82a-4291-ab8b-afdd01187fa8/7610035b-c7e3-4203-93bf-b46a00bcd2ca/audio.mp3?utm_source=Podcast&in_playlist=39e2f432-53df-43b8-a7b9-afdd01187fc4

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 Listen to Live A Little: HERE Follow Lilly on Instagram: @nikkililly Follow Jemma on Instagram: @jemmasbeg Follow the podcast on Instagram: @thatpsychologypodcast Subscribe on Substack: @thepsychologyofyour20s For business: psychologyofyour20s@gmail.com 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 for privacy information.

## Transcript

[0:00] Speaker 1: Hello everybody, Welcome back to the show. Welcome back to
[0:02] Speaker 1: the podcast. It is so great to have you here,
[0:05] Speaker 1: back for another episode as we, of course break down
[0:08] Speaker 1: the psychology of our twenties. Today, I have such a
[0:12] Speaker 1: special guest episode for you, one that goes places we've
[0:17] Speaker 1: never been before. On the podcast, we are talking to
[0:20] Speaker 1: somebody who has spent most of her life navigating a
[0:23] Speaker 1: chronic illness, being in the public eye, and just learning
[0:27] Speaker 1: how to exist in a world that can be very
[0:30] Speaker 1: cruel to people who look different. She was diagnosed just
[0:34] Speaker 1: six years old with a rare medical condition. Her story
[0:36] Speaker 1: is one of amazing power, resilience, creativity. You may know
[0:42] Speaker 1: her from her modeling work, her advocacy, her behind the
[0:45] Speaker 1: scenes content at the Oscars, on Runways film premieres, amongst
[0:49] Speaker 1: many other things. Welcome to the podcast. Nikki Lely.
[0:53] Speaker 2: Thank you. I was just like, that was the most
[0:55] Speaker 2: incredible intro. Really, that was amazing, Okay.
[0:59] Speaker 1: I honestly thank you for saying that, because I always
[1:01] Speaker 1: like to make sure our intros just cover every amazing
[1:04] Speaker 1: dimension of somebody. You did.
[1:05] Speaker 2: That was incredible. Thank you so much for having me.
[1:08] Speaker 2: I was just saying to you before we started I've
[1:10] Speaker 2: been a fan of yours for so long, so this
[1:12] Speaker 2: feels insane And.
[1:14] Speaker 1: The fact that you found me on substack is crazy.
[1:16] Speaker 2: No, Honestly, as soon as I joined substack, just as
[1:19] Speaker 2: like someone that wanted to get more into reading and
[1:22] Speaker 2: it's really introspective and overthinkinger, I was like, okay, I
[1:24] Speaker 2: need to go to substack, and your substacks were literally
[1:28] Speaker 2: the first thing I was recommended, so it was meant
[1:29] Speaker 2: to be.
[1:30] Speaker 1: I think it was.
[1:32] Speaker 2: Yeah, you want the full cycle, can say.
[1:35] Speaker 1: I know, well, full circle, but like in the opposite
[1:36] Speaker 1: direction where I feel like this is what most people
[1:39] Speaker 1: know me for, and the fact that you found me
[1:40] Speaker 1: on my substack, where like I'm a little bit more vulnerable.
[1:43] Speaker 2: No, I love it.
[1:44] Speaker 1: Yeah, that means a lot. I always forget to get
[1:47] Speaker 1: people to introduce themselves. I always just jump into the
[1:50] Speaker 1: question same briefly, introduce yourself. Who are you? How do
[1:55] Speaker 1: most people? How might people know who you are? Already?
[1:57] Speaker 2: So I'm nicky most people know me as n he
[2:00] Speaker 2: lily online and I started making videos like you said,
[2:05] Speaker 2: around eight years old, and it all came from me
[2:09] Speaker 2: being diagnosed with a condition called AVM at six and
[2:12] Speaker 2: I was a super active, chatty, outgoing child. Had to
[2:15] Speaker 2: give up all of the things I loved that made
[2:18] Speaker 2: me happy as a six year old, and my life
[2:21] Speaker 2: was very empty. It was very lonely, and so YouTube
[2:25] Speaker 2: became a way for me to connect to the outside world.
[2:28] Speaker 2: And so I would watch videos from my hospital bed
[2:31] Speaker 2: and almost feel like I was friends with these people
[2:33] Speaker 2: I was watching for like twenty minutes, I could escape
[2:35] Speaker 2: from treatments or hospital monitor sounds or whatever it was.
[2:40] Speaker 2: And so one day I asked my mum and dad
[2:42] Speaker 2: if i'd be allowed to post a video on YouTube,
[2:45] Speaker 2: and they're obviously apprehensive looking back, me being eight years
[2:48] Speaker 2: old is actually insane, but I think they understood it
[2:51] Speaker 2: was like the exception to the rule because I needed something,
[2:55] Speaker 2: and so it became my project for myself, something to
[2:58] Speaker 2: put my energy into that was mine that helped me regrect,
[3:01] Speaker 2: gain control, and to focus on outside of what I
[3:05] Speaker 2: was doing. So that happened when I was eight years old,
[3:08] Speaker 2: and now I'm twenty one, and since then, I've done
[3:11] Speaker 2: advocacy work. I've spoken at the United Nations a lot
[3:15] Speaker 2: of my It's funny because when I first started making videos,
[3:18] Speaker 2: I didn't address my condition at all for like three years.
[3:21] Speaker 2: It was just kind of like a world in which
[3:23] Speaker 2: I wanted to exist without my condition being a factor
[3:25] Speaker 2: because it had taken up every part of my real life.
[3:29] Speaker 2: And so it was just me sharing my love of
[3:31] Speaker 2: makeup and like you know, baking and things that I
[3:35] Speaker 2: was finding as I was diagnosed to put my energy into,
[3:38] Speaker 2: my time into and so that's kind of how it
[3:42] Speaker 2: all began. It was not something where it boomed from
[3:45] Speaker 2: the beginning, but as I posted more on YouTube, I
[3:49] Speaker 2: started to gain a following and started to do some
[3:52] Speaker 2: work on TV and now I'm here. That was like
[3:56] Speaker 2: the longest intro to myself ever. That was not short
[3:58] Speaker 2: at all. Oh, I think that was. I feel like
[4:00] Speaker 2: there's a lot more that you could answer. Yeah, I know,
[4:02] Speaker 2: and I was like, let me just stop now, Yeah,
[4:05] Speaker 2: don't worry.
[4:07] Speaker 1: Yeah, first follow up, what YouTubers did you watch before
[4:13] Speaker 1: you started posting? Do you remember?
[4:14] Speaker 2: Oh my god, of course it was like Zouella classically
[4:18] Speaker 2: like all of the brick Crew they called it. So
[4:20] Speaker 2: it was like Zoella Alfie Tanya Bar Tania Bar is
[4:23] Speaker 2: a funny one because I recently, like were actually a
[4:26] Speaker 2: couple of years ago, met her we were in a
[4:27] Speaker 2: queue for the same event and you have to like
[4:30] Speaker 2: cue up for the carpet, and she started talking to
[4:34] Speaker 2: me first, and in my head all I could think was,
[4:37] Speaker 2: oh my gosh, little Nikki would be dying right now,
[4:40] Speaker 2: like I bought her makeup line, like literally that whole
[4:43] Speaker 2: group was obsessed with them. And so we talked for
[4:46] Speaker 2: like twenty minutes. I didn't actually even tell her my name.
[4:49] Speaker 2: We were just talking, and then she kind of left
[4:52] Speaker 2: and then I didn't see her, and she'd followed me
[4:54] Speaker 2: like straight away after.
[4:56] Speaker 1: And you were like, yeah, oh my god.
[4:57] Speaker 2: No honestly, especially when I'm sure you've that same way
[5:00] Speaker 2: when something happens that you know your younger self would
[5:03] Speaker 2: just die over. It's the most full circle things. So
[5:06] Speaker 2: I would watch them. I also would watch a lot
[5:09] Speaker 2: of like American beauty Guru Bethany Mto, Oh my god,
[5:12] Speaker 2: Bethany Motor, Michelle Farm like Hyler, Oakly, Jokersepher, like all
[5:18] Speaker 2: of that group choice of arm before he was like no,
[5:22] Speaker 2: literally all of them. I was just obsessed. I'd watch
[5:25] Speaker 2: like all of their vlogs at vid Cone and it would.
[5:28] Speaker 1: Be like, you know what, Oh my god, we had
[5:30] Speaker 1: actually Arden Rose. I don't know if you know podcast
[5:33] Speaker 1: the other day and we were talking about how like
[5:37] Speaker 1: you would watch the same video by like seven different
[5:39] Speaker 1: people and it was literally just the same different You'd
[5:44] Speaker 1: be like load them up, and you'd be like and
[5:45] Speaker 1: that one next, and like before you go to school.
[5:49] Speaker 2: I was obsessed, especially with Zoella. I remember doing like
[5:52] Speaker 2: reviews of her new like collections when you were when.
[5:55] Speaker 1: You were on YouTube, I was of full circle. Let's
[6:00] Speaker 1: talk about AVM. Yeah, can you talk about what it's
[6:04] Speaker 1: like to have it? But also for people who may
[6:07] Speaker 1: not know what it is, what's a little brief overview
[6:11] Speaker 1: that they.
[6:11] Speaker 2: Could n Yeah. So I was born with my AVM,
[6:14] Speaker 2: and you have to be born with an AVM, but
[6:16] Speaker 2: it can become active at any age. So someone could
[6:18] Speaker 2: live up until twenty one, which is my age now,
[6:21] Speaker 2: and then it could be triggered until then, never know
[6:24] Speaker 2: they have it, never have any signs, never really show
[6:27] Speaker 2: up on scans unless they were kind of looking for it.
[6:30] Speaker 2: And so till I was six years old, both sides
[6:33] Speaker 2: of my face looked the exact same. There was no
[6:35] Speaker 2: inkling that there was anything wrong with me. And then
[6:38] Speaker 2: at six years old, I started having veins and sweating
[6:41] Speaker 2: appearing on the right side of my face. Didn't know
[6:44] Speaker 2: what it was, didn't think much of it, but we
[6:46] Speaker 2: went to the doctor. The doctor very quickly referred me
[6:48] Speaker 2: to another doctor and then ensued a bunch of tests
[6:52] Speaker 2: and scans and just hospital stuff and appointments, and then
[6:56] Speaker 2: after a couple of months, it was very quick turn
[6:59] Speaker 2: around because everyone was kind of like, what is going on.
[7:02] Speaker 2: I was told with my parents sat in kind of
[7:06] Speaker 2: a dingy hospital room that I had in AVM. So
[7:09] Speaker 2: an AVM is basically an abnormal connection between your arteries
[7:12] Speaker 2: and your veins. So all over your body you have arteries,
[7:15] Speaker 2: veins and capillaries, and capillaries go in between your arteries
[7:19] Speaker 2: and veins to balance out the high and low flow
[7:21] Speaker 2: pressures between them. But when you have an AVM, your
[7:24] Speaker 2: capillaries basically aren't formed in the places that they need
[7:28] Speaker 2: to be, so your arteries and veins collide directly into
[7:30] Speaker 2: each other and tangle. So it's an abnormal connection, and
[7:34] Speaker 2: because of that, there's a build up of pressure from
[7:37] Speaker 2: the blood vessels, which causes pain, swelling, appearance of veins,
[7:43] Speaker 2: but also the worst part for me and people with
[7:46] Speaker 2: AVMs is bleeding, so you can have life threatening bleeds
[7:49] Speaker 2: because of the build up of pressure. It's almost like
[7:51] Speaker 2: a pressure cooker where there can be a build up
[7:54] Speaker 2: of pressure and that blood vessel is just ready to
[7:55] Speaker 2: go and then you can have like a really bad bleed.
[7:58] Speaker 2: So I was in a coma when I was thirteen
[8:00] Speaker 2: because of the goodness, yeah, for eight days because of
[8:03] Speaker 2: the bleeds so bad. Yeah. So I've had a lot
[8:06] Speaker 2: of like near death experiences, and I think that's what's
[8:10] Speaker 2: crazy is I think a lot of people on social media,
[8:12] Speaker 2: I mean, if you followed me for a while, you'll
[8:14] Speaker 2: know kind of as much as you can the depth
[8:16] Speaker 2: of what I've been through, like physically, but a lot
[8:19] Speaker 2: of people just know me from my appearents and not
[8:21] Speaker 2: like the physical side because I share it, but I don't,
[8:25] Speaker 2: you know, I'm not like pulling my phone out when
[8:27] Speaker 2: I'm in the emergency room or I'm in a hospital appointment,
[8:31] Speaker 2: So what they see is more me talking about like
[8:33] Speaker 2: my parents versus the physical side that affects me, you know,
[8:37] Speaker 2: day to day, Like I every Wednesday or every other
[8:40] Speaker 2: Wednesday have to go and see my nose doctor so
[8:41] Speaker 2: he can check if there's any blood vessels that need
[8:44] Speaker 2: to be you know, treated so that I don't then
[8:46] Speaker 2: start having a bleed. So it's always you never feel
[8:50] Speaker 2: like you're stable. There's no sense of stability when you
[8:53] Speaker 2: have an AVM, and currently there's no cure. Everything's kind
[8:56] Speaker 2: of trials or I've been on three trial drugs, none
[8:59] Speaker 2: of them were for me. I've had ninety eight surgeries
[9:02] Speaker 2: to just try and maintain my symptoms for four years.
[9:06] Speaker 2: Me and my parents used my parents use their savings
[9:10] Speaker 2: to get me treatment in America for four years every
[9:13] Speaker 2: six to eight weeks. So my life has kind of
[9:18] Speaker 2: become about like treat and repeat and hospital, and when
[9:24] Speaker 2: I was younger, especially hospital, we talked about it as
[9:27] Speaker 2: if it was my second home. And I've always kind
[9:30] Speaker 2: of struggled a lot with like my relationship with my
[9:33] Speaker 2: body because from a very early age it's kind of
[9:35] Speaker 2: given over to doctors and stitched up, cut into it
[9:40] Speaker 2: didn't feel like mine. So for a lot of my life,
[9:43] Speaker 2: I haven't really had autonomy over my body, which is
[9:46] Speaker 2: been a really hard thing because I think when you're younger,
[9:48] Speaker 2: like you know, you're trying to find yourself and find
[9:51] Speaker 2: who you are and have a sense of self and identity.
[9:53] Speaker 2: So when like your body, which is kind of the
[9:55] Speaker 2: biggest thing you have that's with you at all times,
[9:57] Speaker 2: it's kind of been given over to these other people,
[10:00] Speaker 2: and you know, your life becomes so out of control
[10:02] Speaker 2: so early, it was incredibly difficult. Yeah. I think that's
[10:07] Speaker 2: the thing with dealing with an AVM is that it's
[10:09] Speaker 2: or any chronic illness where there is no end in sight,
[10:11] Speaker 2: there's no cure. It's so hard because you just feel
[10:15] Speaker 2: like a duck that's just kind of trying to tread
[10:16] Speaker 2: above water and you never know, Like I could have
[10:19] Speaker 2: a good period for a month and then suddenly, like
[10:23] Speaker 2: you know, hell breaks loose and I'm in the hospital
[10:25] Speaker 2: having nine bleeds a day.
[10:27] Speaker 1: Oh my god.
[10:28] Speaker 2: So I'm you know, I'm doing things like the oscars
[10:30] Speaker 2: or things like that. But the anxiety I felt like
[10:33] Speaker 2: leading up to the oscars because it felt like something
[10:35] Speaker 2: that was set in stone, and my life is so
[10:37] Speaker 2: not set in stone that anything like that. It's like
[10:40] Speaker 2: I never get excited for it because the nerves of
[10:44] Speaker 2: this isn't going to happen, or something's going to happen.
[10:47] Speaker 2: That means that this, you know, doesn't follow through is
[10:50] Speaker 2: so big and has been in my life. That's been
[10:52] Speaker 2: the case that it's very hard for me to look
[10:55] Speaker 2: forward to things and instead be so anxious that it's
[10:59] Speaker 2: not even going to to happen.
[11:00] Speaker 1: Yeah, this is the thing that I was so interested
[11:03] Speaker 1: in talking to you about, is the psychological side of
[11:08] Speaker 1: a chronic illness and the fact that a lot of people,
[11:11] Speaker 1: as you said, would see, I don't know, a visual
[11:14] Speaker 1: difference and that would be it. Yeah, and I think
[11:19] Speaker 1: it's so important that you talk about and that you
[11:20] Speaker 1: are talking to us about. No, there's all this other
[11:23] Speaker 1: side of it, like this the mental load of the
[11:28] Speaker 1: anxiety that you're explaining. And what really struck me about
[11:31] Speaker 1: that was you being like, yeah, all these great things
[11:34] Speaker 1: are happening. Imagine not being able to even look forward
[11:37] Speaker 1: to the good stuff because of how distressful that might be.
[11:42] Speaker 2: Yeah. I've been in and out of therapy my whole
[11:44] Speaker 2: life and different things, and in therapy at the moment
[11:47] Speaker 2: having EMDR for chronic PTSD. Yeah, sow finding it it's hard,
[11:53] Speaker 2: Oh my gosh, it is. I went into EMDR because
[11:58] Speaker 2: it kind of felt like the only option CBT wasn't
[12:01] Speaker 2: going to work for me. Because I knew I knew. Yeah,
[12:05] Speaker 2: I'm almost too over therapisted, Like I know everything, I
[12:08] Speaker 2: know why things have happened. I know my mental place
[12:12] Speaker 2: is a product of my physical health mostly, and so
[12:15] Speaker 2: I know all of that. So that's not going to
[12:17] Speaker 2: work for me. I needed to feel like I was
[12:19] Speaker 2: doing something that was like progress and an actual tangible
[12:22] Speaker 2: thing because so much of my life has been things
[12:24] Speaker 2: that haven't been that. So talking about issues is great,
[12:28] Speaker 2: and you definitely need to do that, but that's just ruminating.
[12:31] Speaker 2: So EMDR for me, I've had fifteen sessions of it.
[12:36] Speaker 2: I've got five left. It's a lot. First, when we
[12:40] Speaker 2: first started doing EMDR with my therapist, we actually made
[12:44] Speaker 2: a like almost a timeline of all of the traumatic
[12:49] Speaker 2: things that have happened to me since I was six
[12:51] Speaker 2: years old. And it was like two pages long, and
[12:53] Speaker 2: it was the most crazy thing too, and we kind
[12:55] Speaker 2: of put the dates, although it was a bit blurry,
[12:57] Speaker 2: and like named each experience and it was so insane
[13:01] Speaker 2: to kind of see your trauma kind of laid out
[13:04] Speaker 2: like that. And so then we kind of went through, okay,
[13:08] Speaker 2: which one is the worst out of all of the
[13:10] Speaker 2: worst traumas, and have been targeting that and it is
[13:14] Speaker 2: the most kind of the biggest workout for your brain ever.
[13:20] Speaker 2: I do think that it's helping, But after I do
[13:23] Speaker 2: a MDR, I'm like gone for the whole time, so exhausted.
[13:28] Speaker 2: I remember the first time I had a MDR, I've
[13:30] Speaker 2: literally thought I'd been drugged. I was like, what has
[13:33] Speaker 2: happened to me? I can't position dizzy, just knocked out,
[13:37] Speaker 2: Like I just felt like I wasn't in my body.
[13:39] Speaker 2: Because obviously you kind of also dissociate a little bit
[13:42] Speaker 2: when you're doing that, because you're back in the experience.
[13:44] Speaker 2: So EMDR is great because I feel like it's directly
[13:47] Speaker 2: kind of attacking certain things that have happened to me.
[13:50] Speaker 2: It's hard because I'm also dealing with the reality still
[13:53] Speaker 2: in a way, but it means that because you're bringing
[13:57] Speaker 2: up like the worst things that have ever happened to
[13:58] Speaker 2: you that you would naturally put back in the back
[14:01] Speaker 2: of your mind, You're then kind of you have your MDR,
[14:04] Speaker 2: and then the rest of your week you're left with
[14:06] Speaker 2: that kind of just being at the surface of your
[14:08] Speaker 2: mind and having to deal with that. So that's yeah,
[14:12] Speaker 2: it's hard, but I'm kind of relieved that I feel
[14:15] Speaker 2: like I'm doing something that has like a beginning and
[14:18] Speaker 2: an end in a way. Yeah.
[14:20] Speaker 1: Yeah, And I think also like you have been not
[14:23] Speaker 1: to put words in your mouth, but you have been
[14:25] Speaker 1: in medical institutions for the majority of your life. You
[14:30] Speaker 1: have probably an incredible medical like a knowledge being, dictionary
[14:36] Speaker 1: of terms, see psychological understanding. I'm sure you've met a
[14:40] Speaker 1: million psychologists, a million case workers, a million social workers.
[14:44] Speaker 1: I feel like for somebody like you who is incredibly
[14:48] Speaker 1: self aware, it's something I see with like CBT all
[14:52] Speaker 1: the time where it's just like incredibly difficult to not
[14:58] Speaker 1: just hear what somebody has to saying, like come on,
[14:59] Speaker 1: I heard that exactly, but then a million times cool,
[15:02] Speaker 1: we've got the knowledge I need to do something practical.
[15:05] Speaker 1: I'm so glad that.
[15:06] Speaker 2: Yeah. And my therapist keeps catching me out because we'll
[15:09] Speaker 2: be going through a memory and I'll say, She'll always
[15:12] Speaker 2: stop me and be like, what do you feel now?
[15:14] Speaker 2: What do you see now? And I'll start I can't
[15:17] Speaker 2: just say the thing. I have to then analyze the
[15:19] Speaker 2: thing and explain it is like stop analyzing it, yeah,
[15:22] Speaker 2: just stop analyzing, just say the thing and continue. Yeah,
[15:25] Speaker 2: And I think it comes from like that being That's
[15:28] Speaker 2: the thing is when you're so over kind of therapist
[15:29] Speaker 2: and so self aware. I mean, I'm so self aware
[15:31] Speaker 2: even of my body. I've had to be tapped into
[15:33] Speaker 2: it that you do that in general too much that
[15:38] Speaker 2: then I feel like it's almost also me trying to
[15:41] Speaker 2: because I'm so used to no one understanding that I
[15:44] Speaker 2: have to over explain, over compensate, over justify. So I
[15:48] Speaker 2: find that I'm doing a lot in therapy and my
[15:51] Speaker 2: therapist is always calling me out, being like, just go
[15:54] Speaker 2: with the feeling. You don't need to explain the feeling,
[15:56] Speaker 2: you don't need to make sense of it, just go
[15:58] Speaker 2: with it.
[15:59] Speaker 1: So interesting that you said, like you're so in touch
[16:01] Speaker 1: with your body because probably, like mostly your condition would
[16:05] Speaker 1: like necessitate that, like any pain might be incredibly threatening
[16:09] Speaker 1: or important to deal with. But it's like that even
[16:13] Speaker 1: when you're trying to like heel through trauma, you probably
[16:16] Speaker 1: feel that in your body a lot more intensely than
[16:17] Speaker 1: most people as well.
[16:19] Speaker 2: Totally, And it's this weird thing where I'm constantly kind
[16:23] Speaker 2: of in this fight or flight mode where you know,
[16:26] Speaker 2: I could have the tiniest kind of niggle or feeling
[16:30] Speaker 2: and I'm like, oh my god, where are my tissues.
[16:32] Speaker 2: I'm going to have a nosebleed. And that has been
[16:34] Speaker 2: the case sometimes because my nose beeds can just come
[16:36] Speaker 2: on out of nowhere. So you're constantly kind of preparing
[16:41] Speaker 2: for danger. Your body's constantly in that kind of state,
[16:45] Speaker 2: which means that I'm never able to kind of relax
[16:48] Speaker 2: or return to a baseline. And so like with my therapist,
[16:51] Speaker 2: we've been talking about a lot about window of tolerance.
[16:54] Speaker 2: And you know, obviously the window of tolerance when you
[16:58] Speaker 2: have a lot of traumatic event or a destabilized kind
[17:02] Speaker 2: of nervous system or disregulated that your window of tolerance
[17:05] Speaker 2: is so much smaller, and you bounce up above it
[17:08] Speaker 2: or down below it much quicker, so hyper or hypo arousal.
[17:14] Speaker 2: And so for me, I think what's been helpful with
[17:18] Speaker 2: therapy is I'm so self aware, but I also treat
[17:22] Speaker 2: that self awareness as like I'm very hard on myself.
[17:27] Speaker 2: And so what it's helped me with is being able
[17:29] Speaker 2: to apply these theories to myself and make sense of
[17:32] Speaker 2: them when a lot of my life has been not
[17:34] Speaker 2: being able to kind of put something in a box
[17:37] Speaker 2: and make sense of it as just that because it's
[17:39] Speaker 2: so much and it's so messy. But equally, you know,
[17:43] Speaker 2: I'm so tapped into my body, but I'm also I've
[17:45] Speaker 2: been through a lot of like dissociation from my body
[17:47] Speaker 2: and detachment where it's because it's not felt like mine,
[17:50] Speaker 2: it doesn't feel like it's mine. I remember I had
[17:53] Speaker 2: a massive surgery a few years ago. It was a
[17:55] Speaker 2: twelve hour surgery and I was recovering for four and
[17:58] Speaker 2: a half months, and that was one of the I mean,
[18:02] Speaker 2: the rock bottom of my life, that whole recovery period,
[18:05] Speaker 2: and I remember looking at my hands and being like,
[18:07] Speaker 2: these hands don't feel attached to my body, Like I
[18:10] Speaker 2: felt so outside of my body because so much had
[18:12] Speaker 2: happened that it was kind of like, yeah, you need
[18:15] Speaker 2: to shut down to just survive through this. But yeah,
[18:19] Speaker 2: I think you know, therapy is one of those things
[18:21] Speaker 2: where it's almost like the most important relationship outside of
[18:24] Speaker 2: the one you have with yourself. To have a good
[18:27] Speaker 2: therapist or a bad therapist or psychologist can make or
[18:29] Speaker 2: break your experience. Yes, because I've had some rubbish ones
[18:33] Speaker 2: where I go into it instantly a note in my gut,
[18:36] Speaker 2: this isn't going to work.
[18:37] Speaker 1: How do you know that it's just.
[18:39] Speaker 2: A feeling I gets. It's almost like I guess, like
[18:41] Speaker 2: speed dating, like we're dating. It's that feeling of like, yeah,
[18:45] Speaker 2: this isn't going to work, or this I feel like
[18:47] Speaker 2: this could work. Obviously, you know you can't. You need
[18:50] Speaker 2: time to see. But I do feel like for me,
[18:52] Speaker 2: the person matters as much as the therapy. So I
[18:57] Speaker 2: feel like and also in my life, a lot of
[19:01] Speaker 2: doctors for medical stuff haven't seen me as a whole person.
[19:06] Speaker 2: They've seen me as a problem that needs facing.
[19:08] Speaker 1: I was going to say, I feel like you would
[19:09] Speaker 1: have a good nose for it because you've probably dealt
[19:11] Speaker 1: with a lot of people in this setting. You can
[19:14] Speaker 1: tell who has genuine empathy.
[19:15] Speaker 2: Yeah, is that?
[19:16] Speaker 1: Do you think your empathy radar is quite too high?
[19:19] Speaker 1: Too high?
[19:20] Speaker 2: Oh my god, in the sense of I'm such a
[19:22] Speaker 2: deep feeler and I'm so overly aware of like there
[19:25] Speaker 2: could be a change in energy in the room, and
[19:27] Speaker 2: I'm like, someone's angry with me, someone's upset, you know.
[19:31] Speaker 2: So I'm so aware of that. And I think I
[19:34] Speaker 2: completely understand, especially in a medical lens, that doctors have
[19:37] Speaker 2: to detach themselves from their work. I mean, I could
[19:40] Speaker 2: never do what they do day in day out, you know,
[19:42] Speaker 2: delivering hard news, doing these insane surgeries, and then go
[19:46] Speaker 2: home and carry that all with me. You know, you
[19:48] Speaker 2: can't do that. You have to learn to detach thing
[19:50] Speaker 2: with therapy and therapists and whatever else. But equally a
[19:55] Speaker 2: lot of doctors have kind of seen me and told me,
[19:57] Speaker 2: through my life from a very early age, complicated. This
[20:01] Speaker 2: is complex. You're a problem. You're an eleven out of ten,
[20:04] Speaker 2: and so you apply that to you as a person,
[20:07] Speaker 2: especially when you're so young, or this can't be fixed.
[20:12] Speaker 2: So it's like you're constantly kind of sat in this
[20:14] Speaker 2: hospital waiting room and watching everyone else around you leave
[20:18] Speaker 2: the room, but you're still stuck in it because your
[20:20] Speaker 2: problem is never solved. And a lot of doctors have
[20:23] Speaker 2: kind of seen me as yeah, a problem and not
[20:27] Speaker 2: as a whole human. They think, Okay, we can do
[20:29] Speaker 2: this drastic surgery that might help you, but they're not
[20:32] Speaker 2: thinking how is that going to impact my life? How
[20:35] Speaker 2: is that going to impact me as a human? How
[20:36] Speaker 2: is that going to impact me as a thirteen year old,
[20:39] Speaker 2: fifteen year old, twenty one year old who wants to
[20:41] Speaker 2: also live as much of a normal life as you
[20:43] Speaker 2: possibly can, and so I think that's been really hard.
[20:47] Speaker 2: Like paradox is that of course I need, you know,
[20:51] Speaker 2: to have their health support and the medical support, but
[20:54] Speaker 2: a lot of doctors have never seen me as a
[20:56] Speaker 2: whole person. So it's like as soon as I leave
[20:58] Speaker 2: that hospital, I know that they're not considering what I'm
[21:02] Speaker 2: going through outside of the hospital. Like it's like you
[21:05] Speaker 2: get discharged from hospital and it's like, okay.
[21:08] Speaker 1: Off you go.
[21:08] Speaker 2: Yeah, but no, then I'm dealing with four and a
[21:10] Speaker 2: half months of recovery in my room, not leaving it.
[21:13] Speaker 1: And do you think sometimes they see it as like
[21:15] Speaker 1: an intellectual problem maybe for them, Yeah, yeah, where they're
[21:18] Speaker 1: like you're a challenge, this is interesting to me.
[21:21] Speaker 2: Or I've had a lot of which is no problem
[21:23] Speaker 2: with that, but a lot of like junior doctors who've
[21:27] Speaker 2: come in and they've been like, can they, you know,
[21:30] Speaker 2: be a part of this appointment so they can see
[21:32] Speaker 2: your case and stuff like that. Like I remember once
[21:35] Speaker 2: when I was younger, going into a doctor's appointment and
[21:39] Speaker 2: having about I think I must have been nine, and
[21:42] Speaker 2: having about fourteen doctors surrounding me like.
[21:45] Speaker 1: That you nine, Yeah, been really scary.
[21:49] Speaker 2: Especially know their names.
[21:51] Speaker 1: I didn't know their names probably. And then also when
[21:53] Speaker 1: most people and you included, would see a doctor be
[21:55] Speaker 1: like something's really wrong, having that many doctors around you
[21:58] Speaker 1: would probably have thought the worst.
[21:59] Speaker 2: Yeah, yeah that's good.
[22:01] Speaker 1: Yeah, yeah I can imagine. Do you want to talk
[22:09] Speaker 1: about your YouTube channel?
[22:11] Speaker 2: Yeah, let's do it.
[22:12] Speaker 1: Do you want to talk about what it's been like
[22:16] Speaker 1: spending so much of your life on social media? Yeah?
[22:20] Speaker 2: Like crazy?
[22:21] Speaker 1: How is your relationship to it changed? Like before we started,
[22:29] Speaker 1: the listeners need to know we were just like Chatty
[22:31] Speaker 1: Kathy's before.
[22:32] Speaker 2: Oh my god, yeah it was so good.
[22:33] Speaker 1: Yeah, and you were talking about how, you know, you
[22:36] Speaker 1: started TikTok and you've got like a million followers in
[22:38] Speaker 1: like a month. But that individual, that younger you, who
[22:42] Speaker 1: like started it as an escape to now like, yeah,
[22:44] Speaker 1: how has the relationship changed?
[22:46] Speaker 2: Such a good question. I mean it's changed a lot.
[22:49] Speaker 2: When I first started YouTube and put myself on social media,
[22:52] Speaker 2: there was no part of my brain that was like,
[22:55] Speaker 2: this is going to be a job I need to
[22:57] Speaker 2: perform or be a certain way. There was no part
[23:00] Speaker 2: of my brain because it's also that innocent still that
[23:02] Speaker 2: you have as a child that this is play. I'm
[23:05] Speaker 2: going to do this for fun, like you know, this
[23:06] Speaker 2: is for me, which all of us as adults, we
[23:09] Speaker 2: lose that. And that's a lot of what I talk
[23:11] Speaker 2: about and just think about in life is how I
[23:13] Speaker 2: need to tap back into that somehow. Yeah with the
[23:16] Speaker 2: new podcast, Yeah exactly, Like I talk a lot about
[23:19] Speaker 2: how life becomes and think a lot about how life
[23:21] Speaker 2: becomes so serious that we actually lose playtime. And if anything,
[23:25] Speaker 2: adults need that more than even kids because there's so
[23:28] Speaker 2: much more that takes away playtime.
[23:33] Speaker 1: I need. We need to do a whole episode on this.
[23:34] Speaker 1: Oh my god, I would love a deep personal philosophy
[23:36] Speaker 1: of mine. I'm glad that you are.
[23:37] Speaker 2: I would love that.
[23:37] Speaker 1: I know.
[23:38] Speaker 2: I knew that as soon as we met you would
[23:39] Speaker 2: just hit it off.
[23:40] Speaker 1: I love playtime. I honestly do. So many episodes where
[23:44] Speaker 1: like we talk about whimsy and fun. But I feel
[23:49] Speaker 1: like when we're kids, you were talking about like you
[23:51] Speaker 1: started YouTube, It's like this thing is an escaping also
[23:53] Speaker 1: because it was fun and now it's your job, you
[23:57] Speaker 1: do love it less I do.
[23:59] Speaker 2: If I'm going to be honest, I miss I mean
[24:01] Speaker 2: social media, and I'm sure you can agree has changed
[24:04] Speaker 2: so much as a landscape. It's become in an amazing whey,
[24:08] Speaker 2: it's become very legitimate now, and it's become something that
[24:10] Speaker 2: you can do, you know, financially. Like I remember when
[24:14] Speaker 2: it was like the zoellism and stuff, how they kind
[24:16] Speaker 2: of still weren't really taken that seriously or like it
[24:19] Speaker 2: was like, why is she so successful? I don't understand,
[24:22] Speaker 2: whereas now it's you know, it's one of the biggest
[24:24] Speaker 2: markets in the world social media, but I miss the
[24:27] Speaker 2: I think this also just happens with growing up. You
[24:30] Speaker 2: become more self aware of yourself and more aware of
[24:33] Speaker 2: how people perceive you and how you perceive you and
[24:36] Speaker 2: our external opinions and voices, and that is really difficult.
[24:40] Speaker 2: And also when you become your work, it's this really
[24:43] Speaker 2: hard thing. Where where does Nikki Lily start and where
[24:48] Speaker 2: does Niki end? And Niki Lily obviously is still me.
[24:53] Speaker 2: My name is Nicki, my middle name is Lily. But
[24:56] Speaker 2: in a way I've had to create a little bit
[24:58] Speaker 2: of distance from both in order to hang her up
[25:01] Speaker 2: at the end of the day and still be me.
[25:04] Speaker 2: Nicky is me. But it's also like to others, an
[25:07] Speaker 2: inspiring more inspiring version of me. It's a more aspirational
[25:11] Speaker 2: version of me, more positive as all of us are
[25:13] Speaker 2: on social media. It's just a heightened version. And it's
[25:17] Speaker 2: been incredible because honestly, I don't think there's many jobs,
[25:20] Speaker 2: if any, I could have had with my circumstances except
[25:23] Speaker 2: social media. So in that way, it's been, you know,
[25:25] Speaker 2: such a gift. And I'm so so lucky because having
[25:28] Speaker 2: such unpredictable health, you know tomorrow I could be in hospital.
[25:33] Speaker 2: I just don't know. It would be incredibly hard for
[25:35] Speaker 2: me to maintain a job for like a company in
[25:38] Speaker 2: normal nine to five. And so in that way, I'm
[25:41] Speaker 2: so grateful that I've been able to, alongside my condition
[25:45] Speaker 2: do and have a job, because that's what a lot
[25:47] Speaker 2: of people with disability to struggle with is that a
[25:50] Speaker 2: lot of people have to rely on others for that unfortunately.
[25:53] Speaker 2: And so I think how social media has changed for
[25:56] Speaker 2: me is that I still absolutely love it. I think
[25:59] Speaker 2: the hard part for me now is because I'm such
[26:03] Speaker 2: an overthinker, because I'm such a perfectionist, as we've been
[26:05] Speaker 2: talking about, and I lack so much control in myself.
[26:10] Speaker 2: I try and find that even more from my job
[26:14] Speaker 2: because also my job is me, so it links back
[26:16] Speaker 2: to that. I'm sure you feel the same, And so
[26:19] Speaker 2: the hard part is how do I make videos that
[26:23] Speaker 2: still fulfill that younger part of me that is just
[26:25] Speaker 2: for fun, but also how do I make videos that
[26:29] Speaker 2: perform well for my job? And that is the paradox
[26:32] Speaker 2: that I deal with every single day. Yeah, yeah, I'm
[26:36] Speaker 2: sure you feel the same.
[26:37] Speaker 1: Yeah, I do. And it's just weird. It's just such
[26:40] Speaker 1: a weird thing where you're like, I want to keep
[26:41] Speaker 1: parts of me private, but I also know that like
[26:44] Speaker 1: we've gotten to the stage of social media where the
[26:47] Speaker 1: only thing left that people care about is just like
[26:49] Speaker 1: extreme vulnerability exactly because they're like, I've seen it all,
[26:53] Speaker 1: I've seen it all. We're like getting to like I
[26:55] Speaker 1: feel like like digging down. Everybody wants like the most
[26:58] Speaker 1: vulnerable nugget of truth about you for them to consume,
[27:01] Speaker 1: and sometimes I'm like, I don't really want to do that.
[27:04] Speaker 1: That's why I like don't have TikTok, because I was
[27:06] Speaker 1: just like, I just can't give over every single part
[27:09] Speaker 1: of my life to an audience. Yeah, especially since I've
[27:11] Speaker 1: spent my whole twenties talking about what it's like basically
[27:14] Speaker 1: documented chronicle my entire tray. I know, like two episodes
[27:18] Speaker 1: a week. I talk about myself for two hours a week.
[27:19] Speaker 1: It's it's getting a little bit boring at this point.
[27:22] Speaker 2: But you know, like how I'm going to do?
[27:23] Speaker 1: You know, I mean, there's only so much like you
[27:25] Speaker 1: can scrape the barrel. Have you ever considered quitting social media?
[27:29] Speaker 1: I know you said it's this, it's this amazing job
[27:31] Speaker 1: for you.
[27:33] Speaker 2: I do have. I think a lot of us when
[27:35] Speaker 2: we hit that burnout phase, and I've kind of been
[27:37] Speaker 2: in it recently a lot. If I'm gonna be honest,
[27:39] Speaker 2: I don't think I've ever been more burnt out in
[27:41] Speaker 2: my life. Really, Okay, yeah, I don't know what it is.
[27:44] Speaker 2: I think that I've what's been incredible is me being
[27:50] Speaker 2: able to do things like the Oscars or like in
[27:52] Speaker 2: two weeks I'm going to can Film Festival, or you know,
[27:55] Speaker 2: these massive moments speaking at the United Nations. I've done
[27:58] Speaker 2: so many incredible things that I almost then go back
[28:01] Speaker 2: to my baseline of life and I'm like, Okay, what
[28:03] Speaker 2: do I post now? What do I talk about now?
[28:06] Speaker 2: I feel very lost in between those moments, even though
[28:09] Speaker 2: I know what I need to do, I know what
[28:11] Speaker 2: I need to talk about, but it's almost like there's
[28:13] Speaker 2: this barrier mentally that I'm also like, I have so
[28:16] Speaker 2: many ideas, I have so many thoughts, where do I start?
[28:19] Speaker 2: And then that's when I start spiraling because I don't
[28:22] Speaker 2: have a very logical brain. My brain goes straight to emotion.
[28:25] Speaker 2: So then it's kind of like me being like, maybe
[28:27] Speaker 2: I'm just not cut out for this job, you know.
[28:29] Speaker 2: And then I watch videos on TikTok, and it's like
[28:31] Speaker 2: I can't enjoy the videos because I'm just comparing myself
[28:35] Speaker 2: to maybe their their engagement or maybe their idea. And
[28:40] Speaker 2: so would I stop social media? I mean at this point,
[28:43] Speaker 2: not in the near future. I still have so much
[28:45] Speaker 2: that I want to do. And for me, it's such
[28:47] Speaker 2: a special place. I found a community on it. It's
[28:50] Speaker 2: given me a sense of purpose, it's given me a
[28:52] Speaker 2: sense of control and reclamation of my life. But equally,
[28:58] Speaker 2: it isn't a job that has much stability, and so
[29:02] Speaker 2: that is the hard part is when in my life
[29:04] Speaker 2: I want control and I search for it so deeply,
[29:07] Speaker 2: and then when you have a job that does not
[29:09] Speaker 2: have the stability, I don't go into in an amazing way.
[29:12] Speaker 2: I don't have to go into an office five days
[29:14] Speaker 2: a week or three days a week. But equally I
[29:16] Speaker 2: don't have to go into an office five days or
[29:18] Speaker 2: three days a week. So then what do I do
[29:19] Speaker 2: with myself? And I thrive off of routine and structure
[29:23] Speaker 2: and stability because my life and my body is the
[29:25] Speaker 2: complete opposite of that. So then when you're kind of
[29:28] Speaker 2: chucked into this job that is so last minute, that
[29:30] Speaker 2: is so unpredictable, that is so reliant on other people,
[29:34] Speaker 2: you know, your followers or brands or whatever else it
[29:36] Speaker 2: may be, but he's equally so relignt on you because
[29:39] Speaker 2: you are the product. You are the thing, and the
[29:43] Speaker 2: cog doesn't move unless you're the one moving it. With
[29:45] Speaker 2: this job, it is so hard to not compare. And
[29:50] Speaker 2: I think maybe it's like this delayed burnout where I've
[29:53] Speaker 2: been doing this for so long, Like I'm only twenty one,
[29:56] Speaker 2: But if you can, like a lot of people started
[29:58] Speaker 2: social media and covid, which was kind of the natural trajectory.
[30:01] Speaker 2: Now they're doing social media full time. I've been doing
[30:03] Speaker 2: it for like over a decade, and so because of that,
[30:08] Speaker 2: I feel like I've had this delayed kind of buy now.
[30:10] Speaker 2: I've always gone through phases where I'm like, I don't
[30:12] Speaker 2: know what I'm doing. I'm really lost, I'm really uninspired this,
[30:15] Speaker 2: that and the other. Like we all do with jobs,
[30:16] Speaker 2: you know, we always question what we're doing, even if
[30:18] Speaker 2: we love our job. We always think like it's the
[30:20] Speaker 2: grass greener over here, you know, what should I be
[30:22] Speaker 2: doing differently? And it's always great to want to grow,
[30:25] Speaker 2: but I feel like I really struggle to take in
[30:29] Speaker 2: where I'm at and be happy with it. So I
[30:31] Speaker 2: feel like at the moment, I'm having a little bit
[30:33] Speaker 2: of like a what am I doing with my life?
[30:35] Speaker 2: What do I post? Where do I go? What's important?
[30:38] Speaker 2: What do people want from me? And it's almost then
[30:40] Speaker 2: like paralyzing because I'm then like I don't know where
[30:43] Speaker 2: to go or what to do. And so I will
[30:46] Speaker 2: always love social media, and even if you know, a
[30:49] Speaker 2: few years down the line, I decide that I want
[30:51] Speaker 2: to be less involved in social media aspect, I would always,
[30:54] Speaker 2: i think, want to do something camera facing in some way.
[30:57] Speaker 2: I feel like, you know, I've done so much work
[30:59] Speaker 2: around advocacy to suddenly kind of even though that'd be
[31:02] Speaker 2: completely fine, to suddenly disappear. I think would be such
[31:05] Speaker 2: a shame for the facial difference community and the disability community.
[31:10] Speaker 2: But there is a lot of times where I'm kind
[31:13] Speaker 2: of like, is this right for me? Am I doing
[31:16] Speaker 2: this right? I don't know what I'm doing, so I'm
[31:18] Speaker 2: A couple of weeks ago, I actually forced myself to
[31:21] Speaker 2: leave London and I went to the countryside for like
[31:23] Speaker 2: a couple of days with one of my fads. We
[31:25] Speaker 2: literally were in like a shepherd's heart habit in the
[31:28] Speaker 2: middle of nowhere.
[31:29] Speaker 1: I was like, where is that?
[31:31] Speaker 2: No, Honestly, we went to the New Forest and it's
[31:34] Speaker 2: kind of like a couple of hours outside of London.
[31:37] Speaker 2: Absolutely loved it. We went into this small town and
[31:39] Speaker 2: there were just donkeys on the pavement like there were pedestrians.
[31:42] Speaker 2: It was amazing, so cute. So I needed that because
[31:46] Speaker 2: I think we can get so it can feel like
[31:49] Speaker 2: a rat race sometimes in this job, and especially when
[31:52] Speaker 2: you've been I've been through a lot, it becomes a
[31:55] Speaker 2: rat race, and then some with all of the other
[31:57] Speaker 2: stuff I've got on top. So I absolutely love what
[32:01] Speaker 2: I do and I'm so grateful for what it's given me.
[32:03] Speaker 2: You know, the fact that I went to the Oscars
[32:04] Speaker 2: this year is insane, like could have never ever ever
[32:08] Speaker 2: pictured myself in that room. But equally, I do all
[32:11] Speaker 2: of these amazing things, and then I kind of go
[32:13] Speaker 2: back to reality and I'm like, I don't know what
[32:16] Speaker 2: to do with myself now because you're so kind of
[32:19] Speaker 2: consumed when you're in the moment of that thing, and
[32:21] Speaker 2: then you go back to baseline. I come back to
[32:23] Speaker 2: London and I go back home, go back to my normal,
[32:26] Speaker 2: and I'm so happy shying my normal. My normal has
[32:28] Speaker 2: always actually been what's resonated most with people, with my
[32:31] Speaker 2: reality of my life. But then I'm like, where do
[32:34] Speaker 2: I what is the balance?
[32:35] Speaker 1: You know? It sounds very like golden handcuffs. Yeah, vibe
[32:39] Speaker 1: where it's like, this is a great job, dream job. Yeah,
[32:43] Speaker 1: I'm like supporting myself. I'm going to these amazing things,
[32:47] Speaker 1: but also like hard sometimes I would like a break.
[32:50] Speaker 1: And the thing with social media is like there is
[32:51] Speaker 1: no break. Yeah, because that's the job, right, that is
[32:55] Speaker 1: the job. Can we talk about your comment section for a.
[32:58] Speaker 2: Second, Yeah, comments section. There was a.
[33:01] Speaker 1: Video that you made last year that it was like
[33:06] Speaker 1: a trend of people in your comments of cropping crapping
[33:10] Speaker 1: your face and only showing one side of your face. Yeah,
[33:13] Speaker 1: and then essentially like flipping it and showing your face without.
[33:18] Speaker 2: Using AI to ask, like prompt it to do.
[33:21] Speaker 1: That, to like remove yeah, to remove half of your
[33:23] Speaker 1: face to remove your visual differences.
[33:25] Speaker 2: I'm still getting it today as well.
[33:27] Speaker 1: Really, God, people are awful. Just how does a few
[33:31] Speaker 1: on people do that?
[33:33] Speaker 2: It felt so dehumanizing. It was so weird because also
[33:40] Speaker 2: it was on a video that was just a trend.
[33:42] Speaker 2: It was a photo of me when I was younger,
[33:44] Speaker 2: and then you swiped and it was a photo of
[33:45] Speaker 2: me now, And I think I got tens of thousands
[33:50] Speaker 2: of comments all of a sudden, of people, yeah, cropping
[33:54] Speaker 2: the photo of me now to just show the left
[33:57] Speaker 2: side of my face that doesn't have my condition, or
[34:00] Speaker 2: commenting it and then saying wasted potential or the potential
[34:05] Speaker 2: she could have had or Nikki, I've fixed it, or
[34:09] Speaker 2: commenting the photo of me where they've got the like
[34:12] Speaker 2: AI also like using an I for such a stupid
[34:15] Speaker 2: thing to mirror my face so that it completely takes
[34:19] Speaker 2: away that side of my face with my condition, and
[34:22] Speaker 2: then saying commenting it and saying you look so pretty.
[34:26] Speaker 1: Oh God, that's really sad. So sad it makes to
[34:28] Speaker 1: be kind of emotion that makes me really angry.
[34:31] Speaker 2: Yeah, and it's like I've spent this makes me emotional.
[34:34] Speaker 2: I've actually felt emotional about it for a really long time.
[34:37] Speaker 1: It's awful behavior.
[34:38] Speaker 2: Yeah, I've spent my whole life trying to accept myself
[34:44] Speaker 2: like and hating myself, to be honest, like my appearance,
[34:48] Speaker 2: my life, my body, hating it all. No one has
[34:50] Speaker 2: been at all of the hate comments. No one has
[34:53] Speaker 2: said to me something that I've not said to myself.
[34:55] Speaker 2: From a young age, I felt so out of control
[34:58] Speaker 2: and I felt so angry with my self and my
[35:00] Speaker 2: body that it was almost going against me, and yet
[35:04] Speaker 2: I was still having to live with it. My body
[35:06] Speaker 2: and my parents felt like my enemy, and I just
[35:09] Speaker 2: couldn't comprehend it. So the only thing I would do
[35:11] Speaker 2: is self hate and you know, all of that kind
[35:13] Speaker 2: of stuff, because it felt like controlled, like how you know, yeah,
[35:16] Speaker 2: what we all do. And so I've spent my whole
[35:20] Speaker 2: life trying to accept the body and the face that
[35:23] Speaker 2: I now have and my new reality and the fact
[35:27] Speaker 2: that I don't look like an average person and see
[35:29] Speaker 2: that as something that is not a negative thing. And
[35:32] Speaker 2: I've internalized a lot of stuff growing up, you know,
[35:34] Speaker 2: not looking the same as anyone in a room, constantly
[35:38] Speaker 2: feeling like the black sheep or kind of othered and
[35:40] Speaker 2: not being able to put in a box, and that
[35:42] Speaker 2: making people uncomfortable, being set out on the street from
[35:44] Speaker 2: a very early age, and therefore not wanting to leave
[35:46] Speaker 2: the house because of that, being scared of kids my
[35:49] Speaker 2: own age that you normally would go outside and play
[35:51] Speaker 2: with because they would be the ones pointing and whispering.
[35:54] Speaker 2: And so they basically undid all of that self work
[35:59] Speaker 2: that I've done and the trauma that I've kind of
[36:01] Speaker 2: internalized growing up, and did all of that work I'd
[36:04] Speaker 2: done to get through that and heal from that, just
[36:08] Speaker 2: through their comments. And even though obviously I'm so aware
[36:12] Speaker 2: and always tell myself, like I see hate comments now,
[36:15] Speaker 2: I was like, poor you, Like you must have such
[36:17] Speaker 2: a sad life to do that, Like that's what I
[36:18] Speaker 2: was spending your time on. But this felt so personal.
[36:22] Speaker 2: It felt completely different because you are going to the
[36:26] Speaker 2: effort of screenshoting my face and cropping it and then
[36:29] Speaker 2: commenting it, and then you know, captioning the comment or
[36:32] Speaker 2: asking Ai, you are going through steps to.
[36:34] Speaker 1: Do this, multiple points where you could say, maybe this
[36:36] Speaker 1: is a really awful idea.
[36:38] Speaker 2: Exactly, you could question your conscience here even if you
[36:41] Speaker 2: think that, even if you think, oh gosh, you would
[36:43] Speaker 2: look so beautiful if both sides of face look the same,
[36:46] Speaker 2: which would be obviously horrible thing. Why are you commenting it?
[36:50] Speaker 2: Why do you think you're doing me a favor? That's
[36:53] Speaker 2: what I found so confusing and difficult about the comments
[36:58] Speaker 2: is everyone was struck sharing it and phrasing things when
[37:01] Speaker 2: they were commenting these photos in a way as if
[37:03] Speaker 2: they were helping me, and in a way as if
[37:06] Speaker 2: it was out of kindness and like they're a good person,
[37:08] Speaker 2: or like.
[37:08] Speaker 1: A compliment you the thing where somebody's like sorry, I'm like,
[37:12] Speaker 1: you cannot even imagine why you would say that, because
[37:15] Speaker 1: it's not like you can change, and even if you could,
[37:20] Speaker 1: why why would you say that?
[37:22] Speaker 2: So it's basically like, oh, my appearance isn't good enough
[37:24] Speaker 2: for your ideas of what pretty is or what it
[37:27] Speaker 2: means to be a human, so you can erase that
[37:29] Speaker 2: half that doesn't fit your standards.
[37:32] Speaker 1: And it's also like, oh, you're not all we care
[37:34] Speaker 1: about is I don't know, making or thinking of you
[37:37] Speaker 1: as beautiful and also ignoring perhaps the side of your
[37:40] Speaker 1: of your like of your chronic illness. That is as
[37:43] Speaker 1: we spoke about before, psychologically, physically, emotionally, socially really intense. Yeah,
[37:50] Speaker 1: and all they're focusing on is wasted potential.
[37:55] Speaker 2: Or it was like, oh god, knew you'd be too
[37:58] Speaker 2: good looking at by the sides of your face look
[37:59] Speaker 2: the same, So you had to do that to you?
[38:02] Speaker 1: Oh my god. So when you saw see those comments,
[38:07] Speaker 1: is it rage? Is it sadness? Do you have a
[38:11] Speaker 1: sense of like I want to retaliate because I feel
[38:14] Speaker 1: like those would all be very natural, And I.
[38:16] Speaker 2: Kind of did retaliate with this one. Yeah. I initially
[38:21] Speaker 2: was like so confused. I was like, what is going on?
[38:24] Speaker 2: Like how has this become a thing just this one point.
[38:27] Speaker 2: It's just a video, Like it's just a normal video.
[38:30] Speaker 2: It's not even addressing my appearance. It's just literally two photos,
[38:34] Speaker 2: and it's become a trend. Like it was. I could
[38:37] Speaker 2: not go into my comments without seeing it. And if
[38:39] Speaker 2: it wasn't on that video, it was on other videos.
[38:42] Speaker 2: And it's like then I couldn't even engage with people
[38:44] Speaker 2: that were being nice and were my normal followers because
[38:47] Speaker 2: of that, it was a sea of it, and so
[38:49] Speaker 2: initially I was just like, what is going on? Like
[38:52] Speaker 2: I couldn't comprehend it, like where it had come from?
[38:55] Speaker 1: Why people or something?
[38:56] Speaker 2: And also why is your brain going to so many people?
[39:00] Speaker 2: So many people? And I'm sure a lot of them
[39:02] Speaker 2: are children, but that is not an excuse. That is
[39:04] Speaker 2: not good enough for me. And so initially it was confusion,
[39:09] Speaker 2: and then it was rage. And I kind of took
[39:12] Speaker 2: a break from social media for a week after it
[39:14] Speaker 2: started happening, and I sat with it, and I wanted
[39:18] Speaker 2: a video addressing it, but I really wanted to kind
[39:20] Speaker 2: of come back down from all of these really. You know,
[39:22] Speaker 2: obviously we would like to react and we would like
[39:24] Speaker 2: to kind of do things in the moment, And I
[39:26] Speaker 2: was like, I need to give myself a moment to
[39:27] Speaker 2: actually work out do I want to give this time?
[39:30] Speaker 2: Do I want to actually make a video addressing this
[39:32] Speaker 2: because a lot of comments and haters just want your
[39:35] Speaker 2: time and want to be recognized. So I was like,
[39:38] Speaker 2: do I actually want to give this the time it
[39:40] Speaker 2: doesn't deserve? But I thought this is an issue so
[39:42] Speaker 2: much bigger than the comments. This is discrimination and it's
[39:49] Speaker 2: just not good enough. And so, you know, me being
[39:51] Speaker 2: like a patron for face equality and all the stuff
[39:55] Speaker 2: I do, it felt like I would be doing an
[39:58] Speaker 2: injustice if I didn't talk. This is just such a
[40:01] Speaker 2: bigger issue than just me. Yeah, And so I did
[40:04] Speaker 2: address it, and it was kind of a lot about
[40:07] Speaker 2: saying like kind of how dare you? And like, by
[40:10] Speaker 2: you doing this, you are racing half of me. And actually,
[40:13] Speaker 2: my condition makes me who I am. It's not who
[40:15] Speaker 2: I am. I do things in spite of my condition,
[40:18] Speaker 2: but my condition is the reason I am who I
[40:20] Speaker 2: am today. It's completely changed me as a person. So
[40:23] Speaker 2: by your racing that, you're racing what I've been through.
[40:26] Speaker 2: You're racing you know, all of the self work that
[40:28] Speaker 2: I've done in one comment and you don't care.
[40:31] Speaker 1: And before you posted that, did you talk to like
[40:34] Speaker 1: your friends about it? Your parents? And what did they say?
[40:38] Speaker 1: Were they probably can imagine being your parents, they would
[40:41] Speaker 1: be like, I don't we don't want any more of this.
[40:44] Speaker 2: Yeah, that's yeah. My mum was quite worried about me
[40:46] Speaker 2: posting it. Yeah, because also at the end, I was like,
[40:49] Speaker 2: get off my page. And she was like, oh, maybe
[40:51] Speaker 2: you shouldn't say that, and I was like, well, no,
[40:53] Speaker 2: get off my page. You know, I'm never very outspoken
[40:56] Speaker 2: like that. I've always been like, I never get involved
[40:58] Speaker 2: in not that this is drama, but I never get
[41:00] Speaker 2: involved in controversy. I'm not controversial. I never get involved
[41:02] Speaker 2: in drama. And if I speak about issues, it's because
[41:04] Speaker 2: they are real issues. And so this felt like it
[41:07] Speaker 2: was kind of leaping a little bit out of that box.
[41:10] Speaker 2: But it was directly addressing something that I'd been through
[41:12] Speaker 2: and an issue today of discrimination, not just a facial difference,
[41:15] Speaker 2: but body type, color, whatever it may be, but in
[41:17] Speaker 2: my own way and how it has affected me. I
[41:22] Speaker 2: filmed the video. I kind of had a few talking
[41:25] Speaker 2: points because I was like, I want this to be
[41:27] Speaker 2: as deal will lended as possible. I want to adjust
[41:30] Speaker 2: the fact that this isn't okay, but also kind of
[41:33] Speaker 2: be like, get off my page, end it with a positive.
[41:37] Speaker 2: So I really wanted to sit there and think, like, Okay,
[41:39] Speaker 2: how do I want to structure this. I kind of
[41:42] Speaker 2: let myself just speak from the heart, but also I
[41:44] Speaker 2: wanted to relay things in the best way I could,
[41:47] Speaker 2: and I sent it to my friend, one of my
[41:48] Speaker 2: best friends, and she was like, this is amazing. Post it.
[41:51] Speaker 2: And when I posted it, I was so anxious. I
[41:53] Speaker 2: was like, oh no, maybe I should have posted it.
[41:55] Speaker 2: And that video has got ten million reviews on TikTok
[41:58] Speaker 2: about me addressing it, and thousands on comments on Instagram
[42:01] Speaker 2: of people, you know, followers and people saying I cannot
[42:05] Speaker 2: believe people are doing this, and so if anything actually
[42:08] Speaker 2: helped people. Even now, if people comment that on my videos,
[42:13] Speaker 2: other people say why are you doing this? She said,
[42:16] Speaker 2: she doesn't like it and this isn't okay. So it's
[42:18] Speaker 2: kind of created more allyship, I feel like, and also
[42:21] Speaker 2: made people that don't have a facial difference or a
[42:23] Speaker 2: bodily difference aware of a really big issue on social media.
[42:28] Speaker 2: But it's also it's down to the social media apps.
[42:31] Speaker 2: They're not doing enough. And that's my constant like paradox
[42:34] Speaker 2: as well with using social media. So I'm like, you're
[42:36] Speaker 2: not doing enough to support people like me.
[42:39] Speaker 1: Also that they make so much money off of views, likes, engagement,
[42:45] Speaker 1: off of the the reputation that you give platforms of
[42:48] Speaker 1: like you are somebody who goes to the oscar, somebody
[42:51] Speaker 1: who goes to somebody who does this, you have legitimized
[42:53] Speaker 1: social media as a business that benefits them, and then
[42:57] Speaker 1: they'll just let people tearing you and do nothing about it.
[43:02] Speaker 2: So that's also really disheartening with And I get it
[43:04] Speaker 2: such a big issue and it takes so many people
[43:06] Speaker 2: to change almost the most minute thing when it's such
[43:09] Speaker 2: a big company or you know, check, But equally, when
[43:13] Speaker 2: this is such a big issue and it's so rampant
[43:16] Speaker 2: in so many ways, not just for people's facial differences,
[43:19] Speaker 2: there should be more in place to give people more
[43:21] Speaker 2: authority and more control over their accounts to be able
[43:25] Speaker 2: to enjoy social media and enjoy posting and not fear
[43:29] Speaker 2: the backlash because that is not free speech, that is hating,
[43:32] Speaker 2: lat's discrimination.
[43:33] Speaker 1: Yeah. Absolutely, I feel like you've handled that in just
[43:36] Speaker 1: like the most amazing way I tried. Yeah. I think
[43:39] Speaker 1: you deserve a lot of credit for it. That's fucking hard. Yeah,
[43:43] Speaker 1: and you're like when you were what twenty, when that happens.
[43:46] Speaker 2: Yeah, And it's also just such like an unforeseen thing,
[43:48] Speaker 2: like I've never seen anyone, yeah, deal with that at
[43:51] Speaker 2: such a large scale. So I was also just like,
[43:53] Speaker 2: I don't know how to how to deal with this,
[43:56] Speaker 2: how to take this, how to respond.
[43:58] Speaker 1: Yeah, now that you say it, it's like I've never
[44:00] Speaker 1: I've never seen anything like that. No, And obviously, like
[44:03] Speaker 1: people get trolled when they've like at the center of drama, yeah,
[44:07] Speaker 1: or something's happened, but for it to be that individual
[44:10] Speaker 1: and personal and for you to be going through that
[44:12] Speaker 1: at twenty and just being like fuck.
[44:16] Speaker 2: Completely like unprovoked, like just a normal innocent TikTok.
[44:19] Speaker 1: Yeah, I'm glad people are kind of now they can
[44:23] Speaker 1: police it for you. Yeah, and now they can be
[44:26] Speaker 1: like get out, get the fuck out of here, exactly.
[44:29] Speaker 2: I think that's the thing is there is I feel
[44:31] Speaker 2: like we will have a lack of like allyship on
[44:33] Speaker 2: social media and also in life. I think we will
[44:36] Speaker 2: need to be more supportive of one another. And I
[44:38] Speaker 2: completely get life happens, and obviously you're focusing on like
[44:42] Speaker 2: your shit, and you know, it's always a ton of vision.
[44:44] Speaker 2: I'm like that, But you shouldn't have to like people
[44:47] Speaker 2: that are going through the issue, whatever it is, discrimination, misogyny, misogyny,
[44:53] Speaker 2: whatever it is, they shouldn't have to be the ones
[44:55] Speaker 2: that are constantly speaking about the issue. It should be
[44:58] Speaker 2: the people around them that are less affair by the
[45:00] Speaker 2: issue that also speaking about it and you know, pushing
[45:03] Speaker 2: that along and voicing it and amplifying the voice. So
[45:06] Speaker 2: that's what I talk a lot about with you know,
[45:09] Speaker 2: a facial difference. Advocacy is like being an ally is
[45:11] Speaker 2: literally just supporting the message and saying like, this isn't okay,
[45:16] Speaker 2: why are you doing that? And so that is one
[45:18] Speaker 2: beautiful thing about what has come out of social media
[45:21] Speaker 2: is as much as I can obviously say this isn't good,
[45:24] Speaker 2: this isn't good, I obviously obviously spend most of my
[45:27] Speaker 2: life on it because it is my job. And so
[45:29] Speaker 2: there is a beauty in the community I've built. And
[45:32] Speaker 2: also I have gone from being stared at on the
[45:35] Speaker 2: street because of my appearance only on face value, whereas
[45:40] Speaker 2: when I was younger, whereas now I get stared out
[45:42] Speaker 2: on the street mainly because people recognize me.
[45:44] Speaker 1: Wow.
[45:45] Speaker 2: So that's been a really beautiful shift.
[45:48] Speaker 1: And is it nice as well to feel like if
[45:50] Speaker 1: somebody is looking at you you can be like, yeah,
[45:52] Speaker 1: it's because of that, yeah other reason.
[45:55] Speaker 2: Yeah, it's not always that I'm not like, oh, you
[45:56] Speaker 2: know me like instantly, but I do feel like it's
[45:59] Speaker 2: beautiful now because they'll make me see my condition and
[46:01] Speaker 2: that's like how they know it's Niki, but it's like
[46:06] Speaker 2: they see Niki, And I think that's what's beautiful is
[46:08] Speaker 2: I've spent so much of my life only being seen
[46:10] Speaker 2: as my condition, my doctors, by myself, by people on
[46:15] Speaker 2: the street, peers, whatever it may be. It's been really
[46:18] Speaker 2: beautiful to be able to change that narrative through what
[46:21] Speaker 2: I do with especially kids and young people, as like
[46:26] Speaker 2: I am Nikki, Lily, I'm Nikki, I'm not oh the
[46:29] Speaker 2: girl with the medical condition.
[46:31] Speaker 1: Yeah.
[46:31] Speaker 2: So when people recognize me now, they're just coming up
[46:33] Speaker 2: to me and saying like, oh, I love you, Can
[46:35] Speaker 2: I have a photo?
[46:35] Speaker 1: Or they just speak to me.
[46:37] Speaker 2: And that's been really special because I've spent so much
[46:39] Speaker 2: of my life hiding myself. Like even now, I from
[46:43] Speaker 2: very early age internalize like things to do when I
[46:45] Speaker 2: walk past a big group of people, or like do
[46:47] Speaker 2: this and scratch my head to you know, pretend that
[46:50] Speaker 2: I've can't itch that covers my eye when I'm going
[46:52] Speaker 2: through a busy place, Like I still do it. Really, Yeah,
[46:56] Speaker 2: it's so internalized. You went to the oscars, I know,
[47:05] Speaker 2: crazy crazy. Yeah, do you want to talk about that,
[47:08] Speaker 2: Let's do it.
[47:09] Speaker 1: When you were there, did you have that impulse?
[47:13] Speaker 2: I was so anxious about the Oscars because firstly I
[47:17] Speaker 2: was like, I'm not an actor, don't know why I'm here,
[47:20] Speaker 2: Like I had such bad imposter sydrome.
[47:22] Speaker 1: Honestly, they invite so many people who are just doing
[47:25] Speaker 1: amazing things. Yeah, they know all difference based exactly.
[47:27] Speaker 2: So the Oscars have twenty five spaces to fill every
[47:30] Speaker 2: year that are outside of cast crew. And you know,
[47:32] Speaker 2: other people go to the Oscars, and I was one
[47:34] Speaker 2: of those twenty five. Globally, I think I was the
[47:38] Speaker 2: only person from the UK, And so it's like you
[47:40] Speaker 2: and your plus one, which is who'd you bring? Insane?
[47:43] Speaker 2: I just brought my manager, borring I honestly, I I
[47:46] Speaker 2: no offense to my manager. I would have loved to
[47:48] Speaker 2: have rung like a friend or a family member, but
[47:51] Speaker 2: I knew that my manager would be the most supportive
[47:54] Speaker 2: in that high pressure environment, like he can navigate the
[47:57] Speaker 2: room for me, because I knew that if I bring
[48:00] Speaker 2: like a family member or a friend, I'm then having
[48:02] Speaker 2: to worry about, Okay, where do I need to go?
[48:04] Speaker 2: Whereas the carpet, whereas like he can assert that because
[48:06] Speaker 2: he is my manager.
[48:07] Speaker 1: Job.
[48:08] Speaker 2: Yeah yeah, so I was like, you know what, it's
[48:10] Speaker 2: probably the best idea to do that. But I brought
[48:12] Speaker 2: my best friend with me to La, so like the
[48:15] Speaker 2: surrounding experience was with her and we went to like
[48:18] Speaker 2: an after party together.
[48:20] Speaker 1: But which after party?
[48:21] Speaker 2: Elton John's after party, but.
[48:24] Speaker 1: He wasn't there. Wait, what I know, you can't call
[48:27] Speaker 1: it Elton John's after party if Elton John isn't there. Exactly,
[48:30] Speaker 1: I'm calling it a tailors of concert and she's not performing.
[48:32] Speaker 2: No, Honestly, I think he'd like We got there pretty
[48:35] Speaker 2: late because I had to go back to the hotel
[48:37] Speaker 2: and like change because I couldn't have won that dress
[48:39] Speaker 2: to a party.
[48:40] Speaker 1: The white dress, Yeah, gorgeous. By the way, you would
[48:43] Speaker 1: have gotten dirty there, I feel.
[48:44] Speaker 2: Like exactly even in the bottom of it was getting
[48:47] Speaker 2: dirty just on the street.
[48:48] Speaker 1: Who are you wearing?
[48:49] Speaker 2: So it's a brang called lu Chen. She actually has
[48:51] Speaker 2: a dress in the met Gala this year, which is whoa. Yeah,
[48:55] Speaker 2: she'd turned that dress around in a week.
[48:59] Speaker 1: Go and look this dress. It's it's like a wedding
[49:03] Speaker 1: dress level of just like crazy couture.
[49:08] Speaker 2: Yeah, it's I don't know how she did it. I
[49:10] Speaker 2: was kind of anxious because I've never done a custom
[49:12] Speaker 2: dress before, and obviously when you're doing something like that,
[49:15] Speaker 2: you have to wear that dress. Someone spent their time
[49:17] Speaker 2: and their effort on it.
[49:17] Speaker 1: Yeah, you can't just go and get something else.
[49:19] Speaker 2: No. Yeah, I'm so used to having options, and options
[49:21] Speaker 2: make me feel safe because I'm like, we've got plan A,
[49:24] Speaker 2: plan B, plan C. So for this, it was like
[49:26] Speaker 2: I was putting all my eggs in one basket and
[49:28] Speaker 2: being like, this, well, this is what I'm wearing. And
[49:30] Speaker 2: because it was the Oscars, I was like, but what
[49:31] Speaker 2: if I don't like it? What if it's not perfect?
[49:33] Speaker 2: It was perfect and I couldn't have been happy with it,
[49:36] Speaker 2: And because it was custom, I can now keep it,
[49:38] Speaker 2: so I can if I ever have children or like whatever,
[49:41] Speaker 2: I can be like, this is what I WoT the Oscars.
[49:45] Speaker 1: Oh my god, that is the couse fricking thing. Yeah,
[49:48] Speaker 1: because normally you don't get to keep the dress. You
[49:49] Speaker 1: have to give it back exactly.
[49:51] Speaker 2: Yeah, that's the thing I don't think people get is
[49:53] Speaker 2: like everything you're giving back.
[49:55] Speaker 1: Like a bratling for you.
[49:56] Speaker 2: No, but Yeah, the Oscars was phenomenal. I like I
[50:01] Speaker 2: blacked out. I was so anxious from the moment I
[50:04] Speaker 2: to be honest, from the moment I woke up that day,
[50:06] Speaker 2: I was so anxious. I woke up at seven am
[50:08] Speaker 2: because I had to be ready by mid day. Oscars
[50:11] Speaker 2: is like you have you're sat by four for the
[50:13] Speaker 2: you know, for the oscar. So you have to get there.
[50:15] Speaker 2: It takes an hour because of the traffic because they
[50:17] Speaker 2: shut down lay the Chinese. It's I think it's the Dolby.
[50:22] Speaker 1: Theater, Doby Theater.
[50:24] Speaker 2: Yeah, so it's like a big Oscar is massive deal.
[50:29] Speaker 2: But I was so anxious, like I was. We were
[50:32] Speaker 2: in the car on the way and I was like
[50:34] Speaker 2: I can't do this, Like I was, I thought I
[50:36] Speaker 2: was gonna be sick. No, honestly, I whenever I do
[50:39] Speaker 2: something like that, it may seem like can or whatever,
[50:41] Speaker 2: it may seem like I'm fine. I am like having
[50:45] Speaker 2: the biggest panic attack of my life. Inside. I black out.
[50:49] Speaker 2: I blacked out from the moment I got in the
[50:50] Speaker 2: car on the way there to the moment we sat down,
[50:52] Speaker 2: like the whole of the red carpet, I barely remember.
[50:55] Speaker 1: Okay, the fact that you cannot remember it, and you
[50:59] Speaker 1: the you looked that amazing, just because like the poses
[51:03] Speaker 1: you like, you were like your body took over and
[51:05] Speaker 1: you that's exactly how my body.
[51:08] Speaker 2: Oh really yeah, I don't know what did, but I
[51:10] Speaker 2: think my body almost went into like fight flight or freeze,
[51:13] Speaker 2: and it's just like.
[51:13] Speaker 1: Okay through this before and you were like exactly what I'm.
[51:17] Speaker 2: Yeah, no, I blacked out. But I think whenever something
[51:20] Speaker 2: like that happens, all I want is for it to
[51:22] Speaker 2: just go well and everything to align. And because there
[51:24] Speaker 2: was such a big build up, I knew since November
[51:26] Speaker 2: I was going I actually couldn't. It kind of did
[51:29] Speaker 2: for like a wedding where it's like, you know, there's
[51:30] Speaker 2: this massive date in this massive day and you're kind
[51:33] Speaker 2: of like everything needs to work out, so this will
[51:36] Speaker 2: kind of goes smoothly, and you know this could be
[51:38] Speaker 2: the one time I do it in my life, like
[51:40] Speaker 2: a wedding, so let's you know, let's make it count.
[51:43] Speaker 2: So I was just like, please let everything go well
[51:45] Speaker 2: for me for once, and it did. It couldn't have
[51:47] Speaker 2: gone better than I imagine, And it was honestly amazing
[51:50] Speaker 2: that we had such amazing seats and I could see
[51:53] Speaker 2: like the back of Timothy Shannaone's head, like yeah, okay.
[51:56] Speaker 1: Wait, wait wait, I have I have three follow up questions.
[52:00] Speaker 1: Number one, what did you eat? What do they give
[52:03] Speaker 1: you in terms of food and drink?
[52:04] Speaker 2: Okay, So when you're there in the theater, they give
[52:06] Speaker 2: you a snack box under your under your chair, and
[52:10] Speaker 2: it had like chocolate in it, it had popcorn in it,
[52:12] Speaker 2: and it has a drink. That's all you get for
[52:14] Speaker 2: the ceremony. But it's like the Oscar snack box. Oh
[52:17] Speaker 2: my god, I found this new chocolate that I was
[52:19] Speaker 2: obsessed with and I couldn't find it anywhere. Snow caps,
[52:23] Speaker 2: So they're chocolate chips covered in sprinkles and you just
[52:26] Speaker 2: like pull them out and they are insane. So I finished,
[52:29] Speaker 2: like because I hadn't eaten all day. Whenever I'm anxious,
[52:31] Speaker 2: I don't eat. It's like my body is like you
[52:33] Speaker 2: can't eat or this is done. It's like it just
[52:36] Speaker 2: tenses up and freezes up. I'm like the opposite of
[52:38] Speaker 2: like a comfort eater, and I can't eat when I'm stressed,
[52:42] Speaker 2: So I ate like midnight that night. But so you
[52:45] Speaker 2: get a snack box and that's just it at the
[52:47] Speaker 2: Oscar because obviously you're not on tables. You're like in
[52:49] Speaker 2: a theater, like a yeah, and everyone it's so funny,
[52:53] Speaker 2: like at the front they're all there eating theirs snacks
[52:55] Speaker 2: in between like the main.
[52:58] Speaker 1: Snow cap.
[52:59] Speaker 2: Yeah, there's a photo of like Teyana Taylor who's a actress,
[53:03] Speaker 2: and she's got like her snack box like on the
[53:04] Speaker 2: floor and she's like in this like photo and it
[53:08] Speaker 2: just makes it all seem so much more like funny
[53:10] Speaker 2: in real life. I mean, people got to eat.
[53:11] Speaker 1: You know, that is crazy because I was like, and
[53:14] Speaker 1: it's a long it's like four hours, right.
[53:16] Speaker 2: Very long. But after they have something called the Governor's
[53:20] Speaker 2: Ball and it's like in a separate room and that's
[53:21] Speaker 2: where the Oscars winners get their name engraved on their
[53:24] Speaker 2: oscar because obviously they don't know who's gonna win, so
[53:26] Speaker 2: they only put it on after the spread of food
[53:31] Speaker 2: was crazy. So they have wolfgam Puck who's a chef,
[53:36] Speaker 2: like do all the food. And it was like tables
[53:39] Speaker 2: of food. They had a whole dessert table, they had
[53:41] Speaker 2: a whole hot food table, they had a whole ice
[53:43] Speaker 2: cream section. I feel like I didn't enjoy it, probably
[53:46] Speaker 2: because I was in this white dress, like I can't
[53:48] Speaker 2: get anything on this. Yeah, you can't got a full
[53:50] Speaker 2: face of makeup and I've got extensions in This is
[53:52] Speaker 2: not the vibe to be like indulging in food.
[53:55] Speaker 1: Dude, I love how I'm like, So what was what
[53:57] Speaker 1: are you eating? Also with a may?
[53:59] Speaker 2: I mean I had I had a little burger, I sat,
[54:01] Speaker 2: I sat down. I had a burger and I had
[54:02] Speaker 2: a hot dog and I had a nice cream.
[54:04] Speaker 1: Yeah.
[54:05] Speaker 2: But it was so funny. Me and my manager are
[54:06] Speaker 2: like perched on the end of this sofa with like
[54:08] Speaker 2: some Oscars winners, and the Oscars was just on the
[54:11] Speaker 2: table in silence, and I was just eating my burger.
[54:14] Speaker 1: Oh my god, Well this brings me my next question.
[54:17] Speaker 1: So first question was food was good, but you didn't
[54:19] Speaker 1: really have much because you were anxioent.
[54:21] Speaker 2: I had was good.
[54:22] Speaker 1: Yeah, you're a little little bit a little bit Who
[54:24] Speaker 1: were you the most shell shocked to meet?
[54:27] Speaker 2: So I didn't meet that many people because when you
[54:30] Speaker 2: do the carpet, especially, you're giving time slots to go on. Yeah,
[54:33] Speaker 2: so it kind of runs like a well loyered machine.
[54:35] Speaker 2: It's like, you know, a smooth run, not like a
[54:37] Speaker 2: massive queue of people in the carpet. I was really
[54:41] Speaker 2: excited to meet, you know, Amelia de Moldenburg who does
[54:44] Speaker 2: Chicken Shop Date because she does the interviews on the carpet,
[54:47] Speaker 2: so that was really cool. I did want. Yeah, I
[54:50] Speaker 2: did one which is really and like the Academy, like
[54:53] Speaker 2: poasted it and it was crazy. So that was really cool.
[54:56] Speaker 2: That was very full circle. But McKenna gray, she's an actress.
[55:01] Speaker 2: She's going to be in the New Hunger Games, She's
[55:03] Speaker 2: going to be Daphnie like Scooby Doo. She's in Five
[55:06] Speaker 2: Nights of Freddy's so many other things. She's amazing. She's
[55:09] Speaker 2: like a young actress. She's nineteen, which is.
[55:12] Speaker 1: She is also the girl who was like she was
[55:14] Speaker 1: every single younger version of any blonde.
[55:17] Speaker 2: Yeah, yeah, that's so true. I think she's been in
[55:20] Speaker 2: like the most franchised films ever.
[55:23] Speaker 1: Yeah, I can imagine, like.
[55:26] Speaker 2: The American young actors and actresses. I don't know what
[55:29] Speaker 2: they're eating and I don't know what they're doing. It's
[55:31] Speaker 2: just different. But she was so sweet. She came up
[55:34] Speaker 2: to me and again I was like, I'm not an actress.
[55:36] Speaker 2: I don't know what I'm doing here, Like you know,
[55:40] Speaker 2: did the carpet. I was so anxious for the carpet
[55:42] Speaker 2: as well, because it was my first ever carpet in
[55:44] Speaker 2: the US period. So I was like, I don't know
[55:47] Speaker 2: with my appearents, I don't know how the photographers are
[55:50] Speaker 2: going to perceive me. I don't know how the press
[55:53] Speaker 2: is going to take me or respond to me. Yeah.
[55:57] Speaker 2: I was just very anxious. It was the same when
[55:59] Speaker 2: I went to can and I was like, I don't
[56:00] Speaker 2: know what it's going to be like on the carpet,
[56:01] Speaker 2: I just you don't know, it's not familiar. But everyone
[56:05] Speaker 2: was so lovely and they had like a crowd of
[56:08] Speaker 2: like young people who were like cheering for everyone that
[56:11] Speaker 2: came in. So I know, walked in, they were like
[56:14] Speaker 2: cheering for me, and I did not know what to
[56:16] Speaker 2: do with myself.
[56:16] Speaker 1: I was so awkwardly like they probably knew who you
[56:18] Speaker 1: were as well.
[56:19] Speaker 2: Yeah, but for me, I'm like, oh, they were cheering
[56:21] Speaker 2: for everyone, it's not me, you know, just like that.
[56:24] Speaker 2: But mckennay gray sorry back to that. She came up
[56:27] Speaker 2: to me and was like, Hi, I just want to say,
[56:30] Speaker 2: like me trying to do an American accent of her Hi.
[56:34] Speaker 2: She trying to say, I love your videos, and I
[56:36] Speaker 2: was like, because I really wanted to go you know
[56:39] Speaker 2: who I am, but I was like, let me not
[56:40] Speaker 2: do that. Let me, you know, act like I can
[56:43] Speaker 2: meet her on that level. So I was like, oh
[56:45] Speaker 2: my god, thank you so much. You look like a princess,
[56:48] Speaker 2: because she did. She had this amazing pink dress on.
[56:50] Speaker 2: And then we were just saying it was so hot
[56:52] Speaker 2: because that day was thirty five degrees see, and we
[56:56] Speaker 2: like on the it was outdoors carpet. We were all in,
[56:59] Speaker 2: like the most heavy dress is full face and makeup dying.
[57:02] Speaker 2: All of the Oscars workers had like those neck fans
[57:04] Speaker 2: around them.
[57:05] Speaker 1: Oh my god, that died.
[57:05] Speaker 2: It was yeah, it was so hot. So we were like,
[57:08] Speaker 2: are you dying? Yeah, are you dying? Yeah? She was
[57:11] Speaker 2: so sweet. We spoke for a few minutes and I
[57:12] Speaker 2: was like, how are you feeling. She was like, I'm
[57:14] Speaker 2: really nervous, but I'm excited to be here. I'm just
[57:18] Speaker 2: so sweet. And that was something that was so crazy
[57:24] Speaker 2: because I also forget people.
[57:25] Speaker 1: Obviously.
[57:25] Speaker 2: I know I've got a lot of followers, but you
[57:27] Speaker 2: do just say I'm sure you feel saying you do
[57:29] Speaker 2: just think that is a number you forget every one
[57:31] Speaker 2: of those people. And those people aren't just in the
[57:34] Speaker 2: UK or Australia, they are all across the world. So
[57:37] Speaker 2: then when she said like, oh, I love your videos,
[57:39] Speaker 2: I was like, you're in America, You're an incredible actress,
[57:42] Speaker 2: and you know who I am. It was this really
[57:44] Speaker 2: strange like and also the fact that, like what I think,
[57:47] Speaker 2: acting is such a legitimate job and sometimes doing social
[57:50] Speaker 2: media can feel a little bit less legitimate or like
[57:52] Speaker 2: real or like important. And so for me it was
[57:56] Speaker 2: this really weird thing where it's like she recognized what
[57:58] Speaker 2: I was doing and kind of validated it, and then
[58:00] Speaker 2: that gave me a bit of like confidence. I think.
[58:03] Speaker 1: Yeah, so she was she was like the one that
[58:05] Speaker 1: was Yeah. So the Elton John after party was fun,
[58:09] Speaker 1: very very fun. Did you see anybody call there?
[58:11] Speaker 2: So there's a series I'm obsessed with called Tell Me Lies.
[58:14] Speaker 1: I've heard about this. Somebody told me I feel like.
[58:16] Speaker 2: You should watch it because there's a lot of psychological
[58:19] Speaker 2: stuff in it. Like I feel like you'd be like, yeah,
[58:21] Speaker 2: he's got this wrong with him. Like I feel like
[58:23] Speaker 2: you'd really enjoy it.
[58:24] Speaker 1: Is it like reality TV.
[58:25] Speaker 2: No, oh okay, Oh it's amazing. You should watch it.
[58:28] Speaker 2: So some of the cast was there, and I wasn't
[58:31] Speaker 2: like I was too I'm not I don't really drink
[58:34] Speaker 2: at all, but I was too sober to go up
[58:35] Speaker 2: to them and like be like hi, yeah, so I
[58:38] Speaker 2: was so anxious. I like, didn't you know, drink anything
[58:40] Speaker 2: that day? But yeah, we saw them, he asked, we
[58:44] Speaker 2: saw Milo Mannheim, who's going to be the new Flinn
[58:51] Speaker 2: Rider in the Tangle that's coming out to You.
[58:53] Speaker 1: Just got the full young Hollywood.
[58:55] Speaker 2: It was literally that was exactly it. It was all
[58:57] Speaker 2: of the young Hollywood like people, which is really crazy.
[59:02] Speaker 2: My best friend, like Alicia, who she came with you right,
[59:05] Speaker 2: came with me. We snuck her in. She's upset with
[59:08] Speaker 2: mine and man home.
[59:09] Speaker 1: She was like, oh my god.
[59:10] Speaker 2: You know. I was like go up to him, and
[59:12] Speaker 2: then she was like nikky, just he just touched me
[59:14] Speaker 2: to get like to go through the going, and I
[59:17] Speaker 2: was like go up to him. She was too scared.
[59:19] Speaker 2: So it's basically both of us fangunning. You're like, no,
[59:21] Speaker 2: you go up to them. Now you're up to the
[59:23] Speaker 2: whole night, and.
[59:23] Speaker 1: I'm so glad you just like got to have that
[59:25] Speaker 1: experience and you were like the prayers for the health
[59:28] Speaker 1: or whatever like that is exactly. I don't know prayers
[59:31] Speaker 1: around just like the there it was just.
[59:34] Speaker 2: Like everything aligned and I was so grateful. But I
[59:38] Speaker 2: do feel like my nervous system was like what the
[59:40] Speaker 2: has like happened today? Like and so the day after
[59:44] Speaker 2: we actually left LA and went to Malibu Beach, and
[59:47] Speaker 2: I feel like I needed that to just like reground myself,
[59:51] Speaker 2: to get out of like La La and just be
[59:53] Speaker 2: by some nature, like some water and just kind of
[59:57] Speaker 2: a little bit.
[59:57] Speaker 1: Every time I'm in LA, I feel that way. Yeah,
[1:00:00] Speaker 1: when you were in like the most La situation that
[1:00:02] Speaker 1: you could possibly find yourself. Truly, the oscars other than
[1:00:05] Speaker 1: maybe like a Coachella, a pre Coachella.
[1:00:07] Speaker 2: Oh yeah, it's one of those things where it's like, oh,
[1:00:10] Speaker 2: I imagine doing a carpet in America and that first
[1:00:13] Speaker 2: carpet being like the biggest carpet ever.
[1:00:15] Speaker 1: Yeah, it's I feel like this is the thing. I
[1:00:18] Speaker 1: have a feeling. I have this feeling a lot where
[1:00:19] Speaker 1: I'm like, fuck, I'm doing all the cool stuff when
[1:00:21] Speaker 1: I'm like in my twenties, Like I need to I
[1:00:24] Speaker 1: don't want to slow down, but like I, I want
[1:00:26] Speaker 1: to save some stuff for later. I feel like you
[1:00:28] Speaker 1: probably have the same Do you feel like you.
[1:00:30] Speaker 2: Are actively present and acknowledging the successes you have?
[1:00:35] Speaker 1: No, Because I'm the same as you, I'm going to
[1:00:37] Speaker 1: confidently say that I'm the same as you, and then
[1:00:39] Speaker 1: I'm constantly like, Okay, what's next. I need to like evolve. Yeah,
[1:00:42] Speaker 1: And I think also I just like never expected it
[1:00:47] Speaker 1: to be to ever be anywhere near anyone famous ever.
[1:00:52] Speaker 1: Like I was like, I'm going to be like a researcher.
[1:00:54] Speaker 2: So wow.
[1:00:56] Speaker 1: I still try and like always just remember myself as
[1:00:59] Speaker 1: like a research and somebody who's interested in the science.
[1:01:01] Speaker 2: So because that's the thing, isn't it when you start,
[1:01:03] Speaker 2: Like even for me, when I started becoming aware of
[1:01:06] Speaker 2: the numbers or of the certain people follow me, it
[1:01:09] Speaker 2: was like, oh can I put this video out because
[1:01:10] Speaker 2: blah blah blah follows me. Oh blah blah blah, I
[1:01:12] Speaker 2: see this. I don't ever think about it that way.
[1:01:15] Speaker 2: That's what I have had to learn. It's just you
[1:01:17] Speaker 2: have to just post, you know.
[1:01:18] Speaker 1: I did it for a while. I think with episodes,
[1:01:20] Speaker 1: I used to really think about it, and now I'm
[1:01:23] Speaker 1: just like whatever, I'm just like it's I just like
[1:01:27] Speaker 1: to remember that, like this is just a job, and
[1:01:28] Speaker 1: I'll have many jobs, so I'll just like do it
[1:01:31] Speaker 1: while it's while I'm having fun. I'll have fun exactly
[1:01:33] Speaker 1: whilst it's working. It works, and that's the way it's
[1:01:36] Speaker 1: always adapt Yeah, speaking of which, you have launched a
[1:01:45] Speaker 1: new podcast called Live a Little.
[1:01:49] Speaker 2: Live a Little, a Little. Yeah, we were just talking
[1:01:51] Speaker 2: about it before we started, and when did you start
[1:01:53] Speaker 2: the podcast? So we started it or I started it
[1:01:56] Speaker 2: in early December. It's been some thing that I've wanted
[1:02:00] Speaker 2: to do for a very long time. I was actually
[1:02:02] Speaker 2: supposed to start podcasts pre covid, and then Covid happened,
[1:02:05] Speaker 2: and then the podcast company was like no longer a thing,
[1:02:08] Speaker 2: and it just didn't end up happening. And also that
[1:02:10] Speaker 2: was like then for Covid was kind of three or
[1:02:12] Speaker 2: four years on and off, and so by that point,
[1:02:16] Speaker 2: my experiences, my perspective, my age had all completely changed. I'm,
[1:02:19] Speaker 2: you know, now out of school, I'm a young adult,
[1:02:22] Speaker 2: Like my self awareness has changed, my interests have changed, priorities,
[1:02:26] Speaker 2: all of that stuff. So I was like, Okay, what
[1:02:28] Speaker 2: does a podcast look for me now? And I'm so
[1:02:31] Speaker 2: someone and I know you're the same way. I will
[1:02:34] Speaker 2: only do something if it feels right. Yeah, And I
[1:02:37] Speaker 2: think a lot of social media has become doing stuff
[1:02:39] Speaker 2: just because like, oh, I'll just start a podcasts, you know,
[1:02:42] Speaker 2: why not if the opportunity's there, And not to say that,
[1:02:44] Speaker 2: you know, if you want to do that, go for it.
[1:02:46] Speaker 2: But I knew that, like the time had to be
[1:02:48] Speaker 2: right for me to start, when I had to have
[1:02:49] Speaker 2: something to say. Otherwise, what is the point? I have to, like,
[1:02:53] Speaker 2: in a lot of my life in a great way
[1:02:55] Speaker 2: and in a bad way. I really struggle to do
[1:02:57] Speaker 2: anything if it doesn't feel fulfilling or purposeful, and that
[1:03:01] Speaker 2: can almost hit me, you know, hit me in the
[1:03:04] Speaker 2: bad way because and then like searching for that in
[1:03:06] Speaker 2: every single thing I do. And then I'm like, Nikki,
[1:03:08] Speaker 2: this can just be a thing. It doesn't need to
[1:03:10] Speaker 2: be like this massive impact or this massive purposeful thing
[1:03:13] Speaker 2: or fulfill you in a certain way. Obviously everything should
[1:03:16] Speaker 2: hopefully fulfill you in life that you do. But for me,
[1:03:20] Speaker 2: the podcast just felt like it was right, and I
[1:03:22] Speaker 2: feel like I was so again with all the short
[1:03:25] Speaker 2: form stuff, although you need to hook this, you need
[1:03:27] Speaker 2: to optimize that, like we were talking about, I needed
[1:03:30] Speaker 2: something that felt like a breath of fresh air. I
[1:03:32] Speaker 2: needed something that felt like an escapism back to kind
[1:03:35] Speaker 2: of my YouTube roots where I just sit and talk
[1:03:36] Speaker 2: to a camera. And it's funny, it's like, as soon
[1:03:40] Speaker 2: as you have a microphone and a camera in front
[1:03:42] Speaker 2: of you, the honesty is just coming out. I don't
[1:03:44] Speaker 2: know what it is, unknock something in you. And so
[1:03:47] Speaker 2: for me, Live a Little is from an idea of
[1:03:50] Speaker 2: a lot of my life. I have felt very alone
[1:03:52] Speaker 2: and I've not had that friend that gets me. And
[1:03:54] Speaker 2: there's been so many things that I ruminate over and
[1:03:56] Speaker 2: I've had no one to discuss them with. So it's
[1:03:58] Speaker 2: my idea of like the listener is the friend, and
[1:04:01] Speaker 2: we can be that for each other. It's a three
[1:04:03] Speaker 2: am chat you have a sleepover, or the call you
[1:04:05] Speaker 2: have with your friend, or the deep introspective chats or
[1:04:07] Speaker 2: the like cringe chats or the embarrassing conversations. And so
[1:04:11] Speaker 2: I've done episodes about like romanticizing what alone time looks
[1:04:15] Speaker 2: like and how I've spent a lot of my time alone.
[1:04:16] Speaker 2: So I saw it as a negative thing and how
[1:04:19] Speaker 2: to make it more perpotful now, you know, learning to
[1:04:22] Speaker 2: play again as an adult, like we were talking about,
[1:04:24] Speaker 2: and like what that looks like because adults, you know,
[1:04:27] Speaker 2: we forget that playtime is so important. Even more so,
[1:04:30] Speaker 2: living little is the idea that I've lived so much
[1:04:32] Speaker 2: life in the things I've done that we've talked about.
[1:04:35] Speaker 2: You know, I as like the youngest person to get
[1:04:37] Speaker 2: a bafter and I got an Emmy when I was
[1:04:39] Speaker 2: like fifteen, these crazy things. But then I've lived so
[1:04:44] Speaker 2: much little life in my childhood. I didn't really have
[1:04:47] Speaker 2: one from six years old at all. I became like
[1:04:49] Speaker 2: sixty when I was six years old, and you know,
[1:04:52] Speaker 2: just normal life experiences or independence I don't have. So
[1:04:56] Speaker 2: it's that idea. But equally, just life is short and
[1:04:59] Speaker 2: life can be so serious times, so we all need
[1:05:01] Speaker 2: to just live a little because tomorrow is not promised.
[1:05:04] Speaker 2: So it's just exploratory. It's supposed to feel comforting. A
[1:05:08] Speaker 2: lot of the people I have on, it's like not
[1:05:09] Speaker 2: really about I've had actors on, advocates on, musicians on,
[1:05:15] Speaker 2: and activists and it's mainly about, of course what they do,
[1:05:17] Speaker 2: but who they are outside of what they do. It's
[1:05:19] Speaker 2: like meant to humanize people, because I think so much
[1:05:23] Speaker 2: of life now is either people dehumanizing one another. Social
[1:05:27] Speaker 2: media can feel you know, so unrealistic and so comparative
[1:05:29] Speaker 2: at times. It's like, let me bring you back to us,
[1:05:31] Speaker 2: so we will like sit on the floor. I take
[1:05:33] Speaker 2: my shoes off, and it's like, you know, it's very
[1:05:35] Speaker 2: rare you see like actors in that kind of setting,
[1:05:38] Speaker 2: like shoes off, like cross legged on a like a
[1:05:40] Speaker 2: little social thing. You're just chilling.
[1:05:42] Speaker 1: It's really good. You should go and watch it. So
[1:05:44] Speaker 1: that's it. With that in mind, what is my final question,
[1:05:49] Speaker 1: what's something really big that you want to achieve in
[1:05:52] Speaker 1: the next ten years? Well a question.
[1:05:57] Speaker 2: I mean there's so many things I think I would
[1:06:01] Speaker 2: really love to have more based on what we've been
[1:06:03] Speaker 2: talking about. More stability, like personally in my life and
[1:06:06] Speaker 2: in my job, and for really content and stay safe
[1:06:10] Speaker 2: and stable with it. That's something I'm still kind of
[1:06:12] Speaker 2: you know, I feel like I'm constantly peddling on a
[1:06:14] Speaker 2: bike and I need to just figure out like what
[1:06:16] Speaker 2: the baseline is and hopefully be able to.
[1:06:18] Speaker 1: Roll with that.
[1:06:19] Speaker 2: But outside of that, I think it's you know, with
[1:06:21] Speaker 2: all of the facial advocacy I do. We still have
[1:06:25] Speaker 2: such a long way to go. It's incredible that I've
[1:06:27] Speaker 2: been able to be in spaces that have, you know,
[1:06:29] Speaker 2: in the past, not been that inclusive aka the Oscars
[1:06:33] Speaker 2: Can Film Festival. I could go on, and so for me,
[1:06:37] Speaker 2: a massive part of what I do is the advocacy,
[1:06:40] Speaker 2: and it's the showing up. I always say that, like,
[1:06:42] Speaker 2: one of my bigger streams is to work with like
[1:06:45] Speaker 2: a game or like a toy, like a Barbie, and
[1:06:48] Speaker 2: create a Barbie with like a facial difference.
[1:06:51] Speaker 1: Oh my god, that's make that happen.
[1:06:53] Speaker 2: I know, that's my dream I've been for so long.
[1:06:55] Speaker 2: I'm like Barbie.
[1:06:56] Speaker 1: They just did an autistic Barbie. Amazing, and I feel
[1:06:59] Speaker 1: like last year they did another.
[1:07:01] Speaker 2: They did like a diabetic Barbie. Yea a diabetic syndrome Barbie.
[1:07:05] Speaker 2: So many different ones, a blind Barbie. So I feel like,
[1:07:08] Speaker 2: of course, every facial difference is different, that's the whole point,
[1:07:12] Speaker 2: but I feel like it would be so incredibly special.
[1:07:15] Speaker 2: I never saw myself in anything growing up. And it's
[1:07:18] Speaker 2: not to say that only people with facial difference should
[1:07:20] Speaker 2: play with this Barbie, but it's just a Barbie. Yeah,
[1:07:23] Speaker 2: and I think so much of kids learning comes from
[1:07:26] Speaker 2: play and comes from exposure to things, and toys are
[1:07:30] Speaker 2: such an incredible way to teach kids about things before
[1:07:33] Speaker 2: you can verbalize them and make sense of them through words.
[1:07:36] Speaker 2: And so for me, that would be incredible, like either
[1:07:38] Speaker 2: with a Barbie or a Lego, or like maybe it's
[1:07:41] Speaker 2: like a sim character, Sim's character that has a facial
[1:07:43] Speaker 2: difference like that is My dream is to enter other
[1:07:46] Speaker 2: spaces which just make it feel so like mainstream and normal.
[1:07:51] Speaker 2: So I think that'd be an incredible thing. I would
[1:07:55] Speaker 2: love to continue doing documentarial work, like in my past
[1:07:58] Speaker 2: I did like a lot of documentary about my life
[1:08:00] Speaker 2: and presenting, so I would love to continue doing that.
[1:08:03] Speaker 2: Ever since I was little, like I mean, I'm definitely
[1:08:06] Speaker 2: not like a look at me like, I'm not that
[1:08:09] Speaker 2: kind of person. I am pretty introverted. But ever since
[1:08:11] Speaker 2: I was little, I loved pretending I was on TV
[1:08:13] Speaker 2: and I loved like that world and I loved it
[1:08:17] Speaker 2: was my escapism, you know, yeah, because I didn't see
[1:08:19] Speaker 2: myself in toys or TV, so that would be my
[1:08:21] Speaker 2: world in which I existed. So I'd love to continue
[1:08:24] Speaker 2: with that and hopefully with what I can do, there's
[1:08:27] Speaker 2: powering numbers. So hopefully the more I can do, the
[1:08:29] Speaker 2: more it opens the door to other people being able
[1:08:31] Speaker 2: to do it. I mean, even at the met Gala
[1:08:33] Speaker 2: this year, there was like a lot more people with
[1:08:34] Speaker 2: disabilities there, which was so incredible.
[1:08:36] Speaker 1: I saw who was the girl who was in the
[1:08:39] Speaker 1: Hunger Games screeping I'm terrible with me, so am I Okay,
[1:08:46] Speaker 1: well look it up. She was the first of a
[1:08:47] Speaker 1: wheelchair user to attend.
[1:08:49] Speaker 2: Amazing, that's what I mean.
[1:08:51] Speaker 1: And I was like, that's fucking cool and also kind
[1:08:54] Speaker 1: of crazy. That's the first person I know, right.
[1:08:56] Speaker 2: I read that and I was a bit like great,
[1:08:58] Speaker 2: but also what ye, I was like, that's that's quite insane. Yeah,
[1:09:03] Speaker 2: it was even like I would touch on it quickly.
[1:09:06] Speaker 2: But like last September, walked in Paris Fashion Week for
[1:09:10] Speaker 2: a brand and it was like one of the first
[1:09:15] Speaker 2: times that there's been someone with a proper facial difference
[1:09:18] Speaker 2: walking through and past fashion week, and I closed it
[1:09:21] Speaker 2: and Vogue Radway was like, Nick, it was the best
[1:09:24] Speaker 2: part of the show, and it was. It was craziness.
[1:09:28] Speaker 1: That's so cool.
[1:09:29] Speaker 2: But again it's like so incredible, but also why is
[1:09:32] Speaker 2: this thing you know? Yeah, So it's just I want
[1:09:35] Speaker 2: things to just feel normalized. And I think sometimes people
[1:09:37] Speaker 2: that don't have facial differences or differences, I think that
[1:09:40] Speaker 2: we want to be like having special treatment. But it's honestly,
[1:09:44] Speaker 2: we just want to be able to be in the
[1:09:45] Speaker 2: room without it feeling either tokenized or like we've had
[1:09:49] Speaker 2: to like kick down ten doors while someone else is
[1:09:52] Speaker 2: kicked down or just slightly opened one to get through.
[1:09:54] Speaker 1: It. So funny to me that it's like, you guys
[1:09:57] Speaker 1: want special treatment and it's like, well, which is not quality. Yeah,
[1:10:00] Speaker 1: it's also just like but you guys have all the treatments,
[1:10:02] Speaker 1: like aren't you getting this? Yeah exactly, people like me
[1:10:05] Speaker 1: would have. Not people like me, people though, like have
[1:10:10] Speaker 1: walked fashion runways, Like do you know what I mean?
[1:10:14] Speaker 1: It's like asking for one small thing is not special treatment,
[1:10:18] Speaker 1: and it really.
[1:10:19] Speaker 2: Wouldn't take that much yeah, exact things to you know, change. Yeah,
[1:10:23] Speaker 2: but maybeople wanting to make the change.
[1:10:26] Speaker 1: Yeah, I want to walk a fashion runway.
[1:10:28] Speaker 2: Oh my god, let's do it.
[1:10:29] Speaker 1: We do it together. I think I'll leave it to you.
[1:10:31] Speaker 1: I think I think you're the professional.
[1:10:33] Speaker 2: I think you're hey, maybe in ten years, you never know.
[1:10:36] Speaker 1: Yeah, we'll see, Yeah, we'll see, we'll see. Well, thank
[1:10:38] Speaker 1: you so much for coming on the podcast. Did you
[1:10:41] Speaker 1: enjoy our chat? I have loved this.
[1:10:43] Speaker 2: This has felt like therapy. It's the best way, Like
[1:10:47] Speaker 2: it felt so like cathartic and I could talk to
[1:10:50] Speaker 2: you for hours. I just know our brains work in
[1:10:52] Speaker 2: really similar ways.
[1:10:53] Speaker 1: Oh my god. It's actually been hard to not be like,
[1:10:57] Speaker 1: oh yeah, i know, like jumping in like as always.
[1:11:00] Speaker 2: Like that with like my podcast, and when I'm talking
[1:11:02] Speaker 2: to people, I'm like rain and rain and rain, so
[1:11:04] Speaker 2: like let them finish. Yeah.
[1:11:06] Speaker 1: And i also have this terrible habit where I'm like
[1:11:08] Speaker 1: mm hmmm mm hmmm.
[1:11:10] Speaker 2: Because you want to like shows that you're acknowledging, yeah,
[1:11:13] Speaker 2: but then you also like or I'll be like yeah,
[1:11:15] Speaker 2: yeah yeah, and I'm like just.
[1:11:17] Speaker 1: Just people always leave comments on my episodes being like
[1:11:20] Speaker 1: shut up, and I'm like no, but I'm no, I'm
[1:11:23] Speaker 1: just so in like because that's what you would do
[1:11:25] Speaker 1: if like it was your creation. Yeah exactly. Yeah, Well
[1:11:28] Speaker 1: I'm so glad. I'm going to leave links to live
[1:11:30] Speaker 1: a little everything else. If you enjoyed the show, even
[1:11:34] Speaker 1: if you didn't go and follow Nikki anyways because she
[1:11:38] Speaker 1: has amazing things to say. Her videos are also just cool.
[1:11:41] Speaker 1: You share behind the scenes of just like amazing things
[1:11:43] Speaker 1: that you're doing in life and also the every day
[1:11:46] Speaker 1: Don't forget that this episode is also on Netflix if
[1:11:48] Speaker 1: you want to go and check it out. You can
[1:11:50] Speaker 1: also follow us on Instagram at that Psychology Podcast, and
[1:11:53] Speaker 1: as Nikki mentioned in the beginning, we have a sub
[1:11:55] Speaker 1: stack also the Psychology of Your Twenties, which you can
[1:11:58] Speaker 1: go and check out right now. Thank you for listening.
[1:12:02] Speaker 1: Be safe, be kind, be gentle to yourself. We will
[1:12:04] Speaker 1: talk very very soon.

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