Full Disclosure with James O'Brien

Award-winning LBC presenter and best-selling author James O’Brien hosts a series of compelling conversations with fascinating people. These are revealing interviews with people who rarely give in-depth interviews, be it from politics, entertainment or news. Subscribe to get a new episode every Friday.

Evie Meg

Evie Meg

Thu, 18 May 2023 11:54

Evie Meg, AKA thistrippyhippie has over 16 million followers on Tik Tok, making her one of the most prominent online disability advocates. Conversely, one of Evie's conditions, PANDAS, is little-known and often misunderstood. For Mental Health Awareness Week, Evie speaks to James about how her life is impacted by PANDAS and Tourette's syndrome, shedding light on how the boundaries between physical and psychological health are often blurred.

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This is a global player Original podcast. Hello, and welcome to Full disclosure, a podcast project conceived entirely to let me spend much more time than I'd ever got on the radio with with interesting People. This week's guest, Evie Meg. Some people listening to this will know exactly who she is, 16.1 million followers on Tiktok, for example. And yet it's probably fair to say that regular Full disclosure subscribers may may need a bit of an introduction. So. How do you introduce yourself, Evie? Well, I'm Evie, Meg. I'm 22 and I am a disability advocate online. So I use my social medias to spread awareness of conditions that I have. So Tourette's and something called Pandas, which most people have never heard of. I think we'll talk more about pandas today because Tourette's is, I mean, we'll obviously talk about it, but it's a better understood condition. Yeah, absolutely than Pandas is. I see your life because normally I'm sitting here with someone who's made films or been in parliament or and I can talk about or written books. You have written a book, of course. And I like to make cod psychological, very profound observations about their, but it's trickier with you. But I do. I see your life in three parts. There's the bit before you got ill, then there's. The bit between getting ill and getting diagnosed. Yeah. And then there's where we are now, which is post diagnosed. Is that a fair breakdown? Yeah, absolutely. So before getting poorly, you were just a schoolgirl who loved gymnastics. Yeah, pretty much. I was quite shy, quiet, you know, I just kind of blended into the background at school, really. I was one of the very quiet kids. Didn't really speak in class. Didn't really put my hand up. And yeah, very much into gymnastics. Gymnastics was my everything when I was younger. And you're good at it. You still are. Thank you. I think so. I've seen the clips you were in the 2012 Olympic torch relay performance. I was, yeah. That was incredible. I was a young sort of athlete. And normal family, normal home, just a normal life. I'm surprised to learn you were quiet because you've sort of embraced. I definitely have. Yeah. I mean, I'm a lot more confident than I was back then. And I honestly think that part of it is because of my Tourettes, because my Tourettes can be so loud and eye-catching. I kind of had to get used to people looking at me and talking to people and. So because of my threats, I'd say I'm actually, it kind of like pushed me out of my shell, I guess, which is kind of nice. I wouldn't have thought of it like that, but when you explain it, it makes perfect sense. So when did when did symptoms first start appearing? But what can you remember? I was about 1314, I was in secondary school and I just suddenly started. It basically started off as anxiety. And so when I was about 15, I was diagnosed with quite bad social anxiety. But then it started developing into like an actual phobia of school. So the actual building just terrified me. And again, we just thought that it was kind of normal for like a person like me who was quite quiet and didn't really like loud noises or being in crowded spaces. But it just kind of kept escalating from there, really, to the point where I had to be pulled out of school for my Gcse's. I was home schooled. So just too much for you, Too much sensory. Yeah. It was just a bit of everything, really. I became really fearful of people at school and I always thought that, like, they were going to hurt me, even though obviously they wouldn't. Sure, but. I should have been to my school. They would have done. I basically just felt tiny when I was in the building because, well, I was actually one of the smallest in my year. But like, it was just, I don't know, it was just like such an intense fear. And yeah, it just came too much, couldn't do it. I started hiding in toilets and my teachers couldn't find me and stuff like that. So how did you exploit? I mean, how were you greeted by the medical? Professionals that you that you encounter, I mean, when you explained that to them, how did they respond? Well, I was referred to cams, right, which is children and adults mental health services, which I'm sure a lot of people are aware of course, but. Again, it I was just diagnosed with social anxiety because that's just all that it looked like at that time, even when it became so extreme, it was just extreme social anxiety. Yeah, pretty much. And then as the years went on, I just developed more and more symptoms. And again, it was still just classed as anxiety. How frightened were you supposed to be? Frightened of the things that you thought that were happening? How frightened were you of? What you were going through, if you see what I mean, do you see the two different things that you can be frightened of? The thought that your school friends are trying to hurt you, but then being frightened of the fact that what you're feeling and what you're going through is obviously not normal? Yeah, I don't know if I was. That aware of it in that way, to be honest, because it's your reality and your living it. I guess. So yeah, I knew that it wasn't normal because I knew that my other friends didn't struggle in that way. All of my other friends, they went to prom, for example, and I wasn't well enough to do that. So I knew that it wasn't a normal thing to feel the way I did. But I didn't. We didn't suspect anything sinister at that time exactly, because it did just look like extreme social anxiety. So. I would. I just assumed that it was something that I would just get over when school finished, really. And were there good days and bad days? Were there days when you thought maybe I'm OK now and then So you'd always have this shadow, always have this fear inside you? Yeah, just every day. It got so bad where I was so scared of just looking at the building where I started doing exposure therapy with my home schooling tutor, where we would basically. Build it up for me to start getting inside the building again. So we'd literally get in her car and drive to the school and sit in the car park for about 5 minutes and then we'd leave again. And even that for me was really overwhelming. So we just kind of kept building it up. But yeah, it was just like this fear that wouldn't go away. And I knew that it was quite irrational because I'd never been bullied or anything, but it was just there, physical as well. You'd feel physical. Oh yeah. Pain. Yes. Yeah. I'd have panic attacks at school and. My teacher would have to pull me out of lessons and stuff and I didn't really understand why it was happening. But again, I did think it was kind of normal because people do get overwhelmed at school. But I noticed that I was like the only one in my friend group that was like this. So but again, we didn't suspect anything. And how did your friends accommodate it? How did they respond? But one of my best friends, we've been best friends since we were about 5:00, and we grew up in the same primary school and then we went to the same secondary school together. And I think it was weird for her because she'd never seen me like that before and she wasn't really sure how to help. But. She was always there for me and me. Going into homeschooling was actually the first time in our lives that we'd ever been away from each other, So that was really difficult. But they were always there for me. I think it's just that they weren't sure what to do, which is understandable. And how much of that would you have been able to rationalize at the time? Did you ever feel abandoned or did you ever feel neglected by your friends? Because they. It's not knowing what to do often makes people do nothing. Yes. Yeah, exactly. I mean, I didn't exactly feel. Neglected. But it was really hard. Like being homeschooled and kind of sitting alone knowing that all my friends were at school together. That was quite difficult. And it like seeing, seeing, seeing all the pictures of them, them at prom. Yeah, that must have been awful. That was tricky. But at the time, like when I look back now, I think, oh, I really wish I'd gone and had that experience with my friends. But at the time, I was like, I can't do it. And I'm not that bothered about going because I was so unwell. But looking back, I do wish it was something that I could have done, but I just wasn't well enough. So we sort of moved through. Now the appearance of new and more serious symptoms. So we're heading from the age of about 15. And then things started getting worse. Yeah. Well, when I was about 15 is when it sort of started to get more dangerous. And I just sort of. I started kind of being very self-destructive and hurting myself, but I suppose the more serious like physical symptoms all just kind of blew up when I was 16 in college and that was when all the seizures and everything started and it really just escalated from there. It was quite scary. When you say hurting yourself, is that because you're just trying to take attention away from how awful you feel inside or? I didn't even know why I was doing it. It was kind of just something that my head told me to do. So I did it, but I didn't really know why. And it was almost like a voice was just telling me to do it. So I just went along with it and I didn't. I didn't know why. Would you feel briefly better afterwards or during? Or would the voice go away? Or would it? It would go away for a bit. That must have been scary. It was. It was. And also I kept having to lie to my friends about why I looked. Because I quite often had black eyes from hurting myself and I was obviously lying to all my friends about how it happened and stuff. And that was that was not very nice because I felt sort of deceptive in a way. But I just like, I didn't know why I was doing it. I mean, I know the reason now, but back then I just kind of, I didn't understand why I was doing it. Well, what about family did, did Did you tell them the truth? Eventually, but not for not for a while. But they'd notice black eyes as well. Yeah, of course. But I'd tell them that it happened at gymnastics or in PE at school or something. But they noticed it. But I told them eventually. And then how do they respond when you do tell them? I mean, because it again, almost impossible to know what to say or how to help. Yeah, I think it really hurt them. It was definitely a really dark time for all of us. They kind of. I think that was when we realized is that I maybe needed more help than what I was getting. But our household were all very close. So there was never any negativity or anything. It was like, OK, let's get you more help and let's try and put more things in place. We're all pulling together. Yes. Essentially that was very special. Yeah, I'm very lucky. So are they the. The things that started happening next, the physical manifestations of the illness that started happening at a new college. Yeah, so when I was 16, after school had finished, we started looking for things to do after my Gcse's. And I love animals. They've always been a massive part of my life. So we found an animal care course, which we thought would be perfect for me. And because of my sort of difficulties and like special accommodations that I needed in school, I was put into like the sort of special needs unit at college so that I could get a bit more support. But that, yeah, I mean it it in secondary school it was literally kind of just severe social anxiety and some, you know, awful behaviors. But then when I went into college, it was. It was just like everything skyrocketed and it was just like everything piled on and looking back, I still don't know why it happened at that exact point. But yeah, it was just probably just the shock of the new, isn't it? And the overload and new. I mean, who knows the what happened first because I know that you had a kind of, you couldn't communicate at all. What order did it come in with regards to ticking or? Having seizures, did you have the moment where you were almost sort of knocked out first and then got what way around was it? Can you remember? Well, my ticks actually started in secondary school. But yeah, they they just, we didn't think there were ticks. We thought I had hiccups all the time because that's what my first tick was. It just sounds like a hiccup, but I was having them hundreds of times a day. And so I tried things like eating slower and stuff like that to try and get rid of these hiccups, which obviously didn't go away, sticking a glass of water from the wrong side of the glass upside down. Obviously none of that works. So we did actually go to the doctors about these hiccups, but they were like, oh, that's really bizarre. Can't do anything. So yeah, that's when the tick started. And then I did get more in college and it was stuff like. Like clapping and blinking and like eyebrow raising. I've had that one for years, just like very minor ones. And then, yeah, as you mentioned, I also started struggling with selective mutism, which I didn't know existed at the time, and I didn't know why I couldn't speak in college, but it was just like a block and I couldn't get any words out. It was almost like the same intense fear that I mentioned in secondary school. I was still very fearful of people paralyzed with fear almost. Is that. Yeah, essentially, yeah. But selective mutism is. I mean, selective is kind of misleading because it makes it sound like a choice and it's not. But basically, it's usually confined to one place or certain people. So with children, the most common place is school. And then, like with me, it was just college. So it was like. The second that I got in the taxi to go to college, that was it. I couldn't speak for the rest of the day. And then I'd come home, walk through the door. Hi, Mom. How are you? Like, it was just a complete switch. I mean, you mentioned them not knowing what to do with your hiccups. How were doctors and cams and other medical professionals dealing with a good sense of confusion more than anything else? Yeah. I mean, there wasn't really much happening at that time you talk about this, so. Matter of factly Evie, which is incredible. But I mean to people listening, whether they are familiar with the work you do on social media to draw attention and do activism for these issues. I mean, you're describing things that are huge and epic and like, what the hell is happening to me? Did you must have had days like that? Where, Yeah, absolutely. I mean, especially around. Sort of even just two years ago when we started realizing that there was something much darker happening. But yeah, I'm. I am quite aware that I do talk about it very sort of relaxed now, which in a way is kind of sad because I'm so desensitized to it that sometimes I don't see the severity of it because I'm just so used to it. But. I suppose I didn't mean it like that. No, it's OK. I meant it more in the sense that at the time, you wouldn't have been able to talk about it like this. Yeah. No, I didn't. Because I suppose when it's actually happening, you're just so in your own head, you don't really think about it like that. It's only sort of afterwards that I kind of thought, oh, OK, yeah, that was. Quite bad that I didn't speak for literally two years in college. And how did people around you deal with it? Because it would be a lot. It'd be a new cohort of classmates, wouldn't it? In college, largely. And you arrived. So it's not like secondary school where your friends knew you before and after and they almost watched the transition. College must have been a different Kirt official together because you arrive in the middle of these people with these symptoms. Yes, Yeah, a lot happened at college and. The support staff that I had definitely did watch me go downhill while I was there, right? But because I was mute from the very first day, it's kind of like that's what they knew me as, so. It's kind of sad, but the other students sort of knew not to engage with me that much because I just wouldn't reply. There were still people that, you know, would say hi and I would, like wave or smile or something. Anything that I could do without actually using my voice. I would do it really. And had your situation had been explained to them, presumably. Yeah, kind of. But again, we didn't really have a diagnosis at that point, so there wasn't really anything to tell them. So you're just Evie who doesn't talk? Yeah, Yeah, pretty much. And did you encounter any meanness? No, no, I didn't really. I had a couple teachers that. Were pushy in a sense that they just really wanted to get something out of me. But they weren't mean. It was just sort of because they knew that I could speak. It's not like my vocal chords don't work or anything, so they knew I could. They thought they could find the magic, yes. And so they would really try and do everything they can to get me to say something. Like for every lesson, the students had their own like personalized goal. And mine was always to say 2 words or to say 3 words. And I wasn't reaching that goal for like about a year and a half, two years. And then I started saying very small words to certain people, but there's still people at that college that have never heard my voice before. Were you enjoying the course? Otherwise, could you? Could you engage with it properly despite not speaking? Not really. I think my health definitely let me down because the facilities there are amazing. They have the most amazing enclosures for the animals, and there's so much like variety and things to do. But I definitely didn't get the full experience because of my health. The, I mean, and now we sort of come into the really scary stuff, don't we? Where you began jerking uncontrollably at college one day. I think you woke up in an ambulance at one point and you've still got no idea and nobody's really got any idea why this is happening. Yeah, So I turned up to college one day. And we were all outside waiting for the teachers to kind of let us in and finish their meeting. And my shoulders started doing this, going up and down. And I was with a friend at the time, and he was like, Evie, what you doing? And I wasn't really responding. And I was kind of like walking in circles. And I didn't know this at the time, but that was all the seizure starting because with seizures, there's so many different types and it isn't just lying on the floor. Thrashing A seizure can look like walking around, not responding. And so I was getting really, really twitchy. And then he was like, Evie, do you want to sit down? And so we got sat down on this bean bag and the teachers came out. I don't know, it's all very blurry, I'm sure. I mean, this was 2016, yes, But they got me on a bean bag. And then. I know that. That's where I went into the full seizure. And then the next thing I know, I'm in an ambulance. That was the first one. Yeah. First ever seizure. Yeah. And there's been a lot since. Yes. Yeah, thousands. When you're in one, what are you conscious of? You know, that you're. Do you know that you're having a seizure? The more familiar it gets? Yes. Yeah. I'm very aware now that I'm in a seizure. And I think that actually adds quite a lot of fear to it because it's like, I know that I'm doing this and I can't stop it. And my body is sort of doing its own thing, which I don't like. I hate not being in control. It's a really scary thing. But I am actually quite aware. In my seizures, it's quite common that I can actually still hear people. It's just that I can't respond. And it might be muffled or it might not even sound like English to me, but I'm still quite aware in them. And are you conscious of time? Are you? Do you know that this too will pass? Are you aware that you just have to? I don't usually know how long it's been, but but you know it will end, do you when you're in it or not. I know it will end at some point, but sometimes I'm in a really severe one and I'm thinking this is one of the ones that's going to go on for hours and hours and my parents are going to have to call for help. Like some of the seizures that I'm in. I just know that it's just not going to stop on its own and that's quite scary because you I would just do anything to come out of it at that point. That's what interested me, the idea that you're conscious of it and yet utterly unable to exercise any control over it at all. It's terrifying, 'cause sometimes I'm in it and I'm thinking things that I want to say to my mom. Yeah, like I'm in so much pain or I need to move. Something hurts or my head is really banging. Or, like, my eyes are stinging because I can't blink. And like, there's just, there's often quite a lot of things I want to say and I just can't. And it's scary for anyone around you as well because, yeah, you know, your mum presumably went on something of a crash course in coping with these. Yeah. Yeah. We're all very desensitized to it now. It's like, what do you mean by desensitized? You just mean we're used to it? Yeah. Just kind of, in a way that it's like, oh. She's having another seizure. Like, whereas most people would be like, oh, panic, OK, but we're just like, oh, it's another one and it will pass, but it's going to be pretty ****** until it does. It's absolutely what was the first diagnosis that you received? The first sort of beyond social anxiety. Well, after social anxiety, I was diagnosed with depression in secondary school. And then. What was after that? What what what was the first diagnosis of the physical manifestations? What What did that was FND, which is functional neurological disorder, right? Which I was diagnosed with in 2018 or 19. Obviously now that was a misdiagnosis. It was very wrong. Yes, but that's the diagnosis that they gave me to explain the physical symptoms. But it's basically a diagnosis when they don't know what's wrong with you. Essentially, we should jump ahead now because you've referred a few times to what we now know or what we knew was coming up. So the big, the big diagnosis is not Tourette's, it is Tourette's. It's Tourette's and Pandas. So you see them as the same because Tourette's came first, didn't it or not, were they diagnosed? It was kind of around. I was diagnosed with Tourette's in 2020 and then diagnosed with pandas July 2022. But I mean, I should have been diagnosed with that when I was about 15 if it was caught. That's why I mentioned it being bigger because it in terms of explaining what went on. Can we break it down? Do we know how much of it is Tourette's and how much of it is PANDAS or I mean the ticking that I'm doing is Tourette's. PANDAS can cause ticks as well. But I think it depends like how long you've had them. And also if you're on medication for pandas and the ticks don't go away, then you kind of know that it's something else, then you know it's not that. And derealization disorder as well came in to the mix a bit before that, didn't it? That was around 2016. That was around the same time that my seizure started. I mean, it's just pages, isn't there really. Yeah. Yeah. I mean, of what has gone on and what has contributed, does it help when you find out that the condition exists? So did you have when they diagnosed you with FND, did you think few and then realized subsequently it doesn't actually make sense? Or did it not make sense from the start? The first one that really made sense was the Tourette's diagnosis. Was it? Yeah, that was a diagnosis that was quite relieving to have because at that point my ticks had gotten so severe. My ticks were diagnosed as, like, FND ticks, and when they got really severe and like debilitating to the point where I couldn't even like walk down the street, we were like, there's no way this has got to be something else. And so the Tourette's diagnosis made sense, But whereas when I got the FND one, it was like, OK, I guess it kind of fits, but it's also a really crap diagnosis to have because there's no help for it and it's. And I found they just stick a label on it and, yeah, send you off on your way. Exactly. Yeah. So like, when I, it's sad, actually. But when I had the FND diagnosis and I, an ambulance was called and stuff, you mentioned the word FND and you're immediately brushed off. And it's almost like you can see their face change because unfortunately a lot of people don't believe in it and they think that it's like made-up or they're doing it deliberately. And like I was referred for physio when I way before we knew I had pandas for my feet to help with my walking. And we showed up to the physio. We've been waiting months and months for this appointment. We showed up to the hospital for this physio session and he was like, how can I help? What can I do for you? And I said I've got dystonia in my feet and, you know, it's been around for months and we need some help to kind of stop this dystonia episode. And he said, you know what it's caused by. And I was really, I didn't want to say it, but I was like I said, I've got a diagnosis of fnd and he went right, OK And then I was sent away. We didn't do anything and I was sent home because it's a byword for. ************. Yeah. Essentially that's what they think they're like, oh, sorry, we can't do anything for this. And that's so they sent me home. Dystonia is uncontrolled. Muscle, cramps, spasms. So you. Yeah. Contractions. Feet would be bent in kind of yeah. So I get it mostly in my I get it in my feet, my toes, my wrists, my hands and my fingers. That's where I get it the first time. Worried about asking a really stupid question? Yeah, that's all right. Go ahead, go for it. Probably should have been a few times before. No, you're fine. First time. I'm only up to it. How do you know? And we'll talk next about what Panthers is and what we know about it, which is far from complete. How do you know where your Tourette's ends and your Pandas begins? Because my Tourette's is all the ticking and twitching that I'm doing right now. Yes, and then my pandas is. All of the things like my seizures, dystonia, paralysis, even the depression and anxiety we now know that was all pandas as well. Delusions, the paranoia, derealization and depersonization disorder. So basically the turrets is just is, just the ticking and the twitching. So. So the most immediately obvious on a normal day is the Tourette's. But the absolute bedrock of what's going on is is. Yeah, yeah. Pandas is like a hidden disease, whereas Tourette's is quite visible and people notice it. So pediatric also I get this right, Pete, I wrote it down. Pediatric autoimmune neuropsychiatric disorder. There's also Pans, yeah, alongside they're two different diagnosis. You have PANDAS, Yeah. Which is you only got diagnosed last year. Yeah. Shall I have a go at explaining what it is or do you want to? No, you can go for it. I get confused with all the medical terms you can try. I bet you do. So you. Hello. You have a sort of inflammation of the brain. Yeah. Which manifests in what we would think of as mental health conditions. So because your brain is swollen, your brain is misbehaving. It is. And it can come from strep to coccal. They're quite confident it comes from strep. Infection Pandas comes from strep. Yeah, that's what the A and the S is on the end. So ***. But that brain response to a physical impetus looks like a mental illness. And that's why you mention depression and anxiety. I know that you've had hallucinations during that. Yeah. So it's really weird and really often misdiagnosed because it looks like mental illness, but it has a physical. Absolutely. Explanation. Yeah. That's why pretty much everyone that has pandas is at some point misdiagnosed with FND is a big one, right. Eating disorders, even things like autism, because of all the sensory issues that it can cause. Yes. Yeah, mental health issues. A lot of people are sent to cams and they don't know what to do with you. Yeah, it's not easy because you get given treatments that would be normal for people with normal depression or treatments even for normal. People with normal hallucinogenic conditions. But that's not what you've got, and they don't know what you've got. And there's a skepticism as well. I think there's we're a lot further behind America in this country for accepting it as a real thing and treating it as a real condition. Absolutely. There's still a lot of research that needs to go into it, and there's still so much that doctors don't know about it. And I think just getting the name out there is really important because. You say the word pandas and people think of the animal like it's got such a cute name, but it's horrific. It's unfortunate, yeah. It's unfortunate though, really. I think. Yeah, but it's just so unknown. Like when I first, when we started finally suspecting it, I went to my GP. And then it was really nerve wracking, suggesting a new condition to them. And he turned around and Googled it right in front of me and I was like, Oh no, this is not a good sign. But that's so common, like nobody knows what it is, not even medical professionals. How did you happen upon it? How did you find out about it? Well, my mum told me afterwards that apparently cams had mentioned pandas to my mum when I was 15 and then said, oh, but that's quite unlikely. Which to be fair, I don't hold against them now because at the time I didn't have typical panda symptoms. It was just the social anxiety. So I can kind of understand that. But it is really frustrating looking back because it's like I could have been diagnosed about seven years ago. But I it was basically through the power of social media that I was diagnosed because I have a friend in America who is living with pans. And she had been spamming my notifications, commenting on all my videos, saying, Evie, I really think you could have pandas pans. Please look into it. And I was like, for God's sake, I was like, who is this? I have enough things already. I don't need another diagnosis. And so I was in denial for quite a long time. And then. I sort of contacted her directly and I was like, why do you think I have this? I'm diagnosed with FND. And she explained it to me. And I was like, gosh, this is like a whole new world that I've never even heard of. And I was in denial for so long. I was actually getting annoyed at her because I was like, I don't want another condition. We're really close friends now and I'm so glad that she did this because she has literally changed my life for the better. But. When she started explaining everything, I kept kind of saying, oh, but I don't have that or but I do this and she's like Evie, that's part of it. And so I did start researching it seriously and then I mentioned it to Mum and we were like, oh, OK, this looks very familiar. And so it was because of her that we started looking into it and I got the diagnosis. I've messed it up. So what I wanted to do at this point was say, oh, now you mentioned social media, which of course is such a huge part of everything that you've done since. But you were already posting before your friend got into, so you were posting. When did you start posting on TikTok is your sort of biggest platform, isn't it? Although you're big on Instagram as well. Insta as I'm supposed to call it. Insta. Yeah. When did you start doing that? Well, I actually started TikTok when it was still musically and it hadn't transitioned yet. And I started in 2016 and I was, I was, I was practicing British Sign Language, which is something that I do. And so that's pretty much all that I did back then. But then because my seizures started this year, I'm sorry, that year 2016, I did speak a little bit about them, not the same extent that I do now. Because it was nice to have that kind of outlet. And I wasn't very big on musically back then. And so it was kind of nice to talk about it and not have loads of people know, if you know what I mean. I think I do like a diary, but with. Yeah. With an audience, yeah, Because at that time it was so new and we had no clue what was going on. And I felt quite alone because obviously I didn't have any friends that had seizures. And so it was nice to have that kind of outlet. And I I did end up kind of. Getting kind of big on musically because where I became paralyzed from the waist down in 2018 because of pandas, obviously at the time they were like, it's fnd, it's because you're anxious, good Lord. And I posted a video of me like learning to walk again and my foot was still dragging on the floor and stuff, but just the fact that I was walking and taking steps was massive and that video went quite viral and that's where I started gaining. So that was like my first big video. But yeah, social media has always been and it helped you. I mean, because that's obviously you touch a lot of people and you reach a lot of people. But the piece, what do you get out of it, I suppose is what I'm asking. I get quite a lot of benefits out of it. So just the fact that basically my TikTok and my Instagram is my. Is my diary, essentially. There's not really much that I don't share. There's obviously stuff that I keep to myself, but sort of health wise, because I want to raise so much awareness of pandas, there's not really anything that I keep out of that because if I did, I wouldn't be fully raising awareness of what it really is. And it's just it's just nice. It gives me the sense that I'm not on my own and that I've got loads of people. In my corner, which is really nice, but I mean there's 16 million followers that you've got. The massive majority of them are not going to have anything to do with Pans. Pandas are they? No, but I do have a lot of followers that are neuro divergent in some way. So I have a lot of followers that also have Tourettes or OK Autism more. They're just their own struggles. And do they tell you how much you mean to them? You're not allowed to be. You're not allowed to be modest now? No, they do. It's lovely. I get so many lovely messages from. I really like the ones that I get from parents as well, because it's nice to have an impact on not just people my own age and not just people younger, but the fact that parents have found some some benefits from what I do. I really like that. Well, if you, if you're living with it and you've never seen it, yeah, Just to know that one other person is going through it must be oddly welcome, Even though you simultaneously wish that nobody was going through it. Yeah. But it is so nice. The pandas Pans community is amazing and I'm very proud to be part of it because we're all so supportive of each other, because it is such an isolating thing and it is so terrifying and it is like you become a different person. And so there's the whole community understands that in a way that nobody else can. Absolutely. And it's still not. It's still not an easy diagnosis to get or even a universally recognized diagnosis. Gosh, no, it's not. I mean, in a way it's easier for me than having the FND diagnosis, obviously, because it's correct. But the fact that just happened in detail, yeah, just a minor thing. But the fact that pandas pans is actually so treatable and it's if you leave it untreated for as, you know too long like mine was, it becomes harder to treat. But it is possible and like for the first time when I was on treatment for the very first time for my pandas, it was like a whole new world. It was crazy. My mom said that it was like getting some of the old Evie back, which was really nice because the treatment addresses the inflammation in the brain and you start like your mom says, you start returning to the pre inflammation. Yes, Person like I'm on a course of treatment right now, which is why I'm so chatty and I'm able to actually just be here, whereas like 3 weeks ago I wouldn't have been able to do it. I saw I thought we might have to reschedule the incident. Yeah. Because you do put it all out there, Evie, don't you? Yes, absolutely. You put some stuff up that's very hard to watch. And it's obviously very important to you that people know as much as you can possibly convey about what you and therefore. Lots of other people are going through, including a lot of people who would not know what was wrong with them. Yeah. And who may if they were told they had pandas pans. They may, like you say, Nah, I've got enough going on, I don't need this in my life. Yeah, no, I totally understand that. I do have a few friends actually, who had similar issues to me. And once I was diagnosed with pandas, I was like, look, I think you should look into this as well because if you could be being treated right now, then you need to look into it. And like they ended up being diagnosed. And it's just like it's amazing because it is life changing to have the right diagnosis and be on treatment. It does change your life. So the beginning of 2022 was tough, wasn't it? The Caesars were seizures had got awful. Yeah, your OCD was really kicking in in a horrible way. And that involves all manner of harmful rituals. And I mean, you know, the word we haven't used yet is exhausting because so much of it is obviously traumatic, but it must just be so exhausting and voices. Loss of control, all that kind of thing. Your friend in America has contacted you. Yeah, you sort out a specialist who might be who would be able to, who at least knew it existed. Yes, because pandas, especially when you're my age, isn't something that you can get help with on the NHS because it's not fully researched yet. So you do have to go private and pay a lot of money, but that was something that I was willing to do, right? Because obviously I was like, you know, paying a lot of money is nothing really compared to, but it's not getting my life back. But it is. It's hard to find anyone that you can talk to. There's a banishingly small number of specialists in this country who you could even have consulted on this very small. And how long did it take them to say, Yep, I know what's going on here? Well, he said straight away from our very first meeting, you don't have FND. And even that was really like powerful and really impactful. And I can still like remember him saying it and the feeling that I got when he said it because I'd had that diagnosis for around three years at that point. And obviously, at that point, my symptoms have been increasing for about 7 or 8 years, so. It was pretty amazing. And he was the first doctor that had ever actually listened to me and not just sent me away and told me that it was because I was anxious, which is, you know, quite common for a lot of us in the pandas community. Unfortunately, even when the symptoms are so violent, yeah, they would still say, oh, it's just you're doing that because you're so anxious. Yeah, Like I showed up to hospital paralyzed from the waist down, and I got sent home because. Hello. It's hard to understand that really, But I suppose that they, a, are frightened of what they don't understand or they don't. Doctors very rarely want to say, I've got absolutely no idea what was going on here. And B, you sort of oscillate so much between being being well and being unwell or being better and being worse that the idea that it's a constant condition that goes up and down so much is quite. Hard for outsiders to track or for outsiders to credit. Yeah, I do get a lot of people that don't fully understand. So, like, for me, dystonia is such a big symptom for me and it's really prominent and a lot of people can't understand why. It's only sometimes that my hands are curled up and not all the time. And so I have to explain that it's when I get an infection and it inflames the brain more and it's a really big symptom for me. Dystonia, but. I don't have any at the minute, which is so nice. I can actually walk around. I can only imagine. And so you were immediately put on a course of antibiotics and steroids, which addresses what I understand to be going on in the brain and the results. I mean, given how long you've been going through this and how severe the situation was, the speed with which the results kick in must have been close to magic. It was. It was literally like miracle tablets. It was crazy. And because it was my very first time on treatment, it was so impactful as well because it was like, my brain was like, what is this? This is amazing. And literally, it was like everything disappeared. The OCD went away. My seizures. I didn't have any seizures for three weeks. And then it creeps back in again when the treatment stops. Yeah, unfortunately, that's horrible. Yeah, it is. Because you must have had moments of thinking. Yeah. Is this it? Now, are we home and dry? Kind of. I kind of knew that it wouldn't last because I had had it for seven years, which is a long time to be untreated. And basically the longer that you leave it, the worse it's going to get and the more that the symptoms are going to increase in severity and the harder it is to treat so. Although I do react really well to treatment, it doesn't last very long, which is a shame, but I enjoy it while I can. No, of course, I don't mean that makes perfect sense. And what happens now, do you know? I mean, it's such an unknown condition. So you can continue the course of treatment and just chip away at it and chip away and chip away at it and hope that, yeah, I mean, because my treatment. The treatment of antibiotics and steroids is such a short term thing. It might give me like up to a month maybe of feeling quite good and seizures being really decreased and having good mobility, but then sometimes it's even just a week off treatment and it all comes back again. But I guess that kind of changes. We're looking for something more long term. So something quite well known in the pandas Pans community is IVIG. Which is supposed to be life changing for a lot of people. And that's kind of what we're aiming for because it's a bit more of a longterm thing. But even that you have to keep getting rounds of it to keep it going. And how much of your life and your mom's life is dedicated to finding stuff out, to searching out stuff like that and looking for new answers. And my mom especially does a lot of it because I'm, I am good. With social media and stuff. But I'm not. I'm not. I don't know. I don't know how to phrase it. She's much better at researching stuff than I am and she's always been totally on the ball with everything. So when I started having, like when my derealization started, which is a mental health condition where you feel like things around you aren't real, when I started feeling this and telling mum about it, I I actually thought that I was going a bit insane. And she had researched it and found an article on de realization disorder. And so every symptom I've ever had, she has straightaway been researching to help me understand it and help her understand it better. And because I'm I find it much, it puts me at ease when I know that there's a name for something. And I'm always trying to find a reason for like every symptom, just because it makes me feel a bit better. But she has. Yeah, her and my dad have always been amazing. What goes on in the rest of your life when you're not on social media or you're not, I mean, because you're 22 now? Yeah. So there's a long road ahead and yet your journey down that road, you can't predict. In any sort of normal way or conventional way because you don't know how big a impact the Tourette's and the panda's panda's going to have. So where does sort of dreams and ambitions fit into your life? Well, I'm hoping that like if I Fast forward five years time, I'm really hoping that I'm in remission by then because five years is another, you know, it's quite a long time and I'm hoping that by then maybe I've had IV IG. And I'm doing loads better. Maybe my seizures are quite rare to happen. I can't really imagine my life without seizures because since 2016 they've just been such a constant thing. But I do hope that one day they're just gone and I never have to deal with them ever again. Do you know people who've made that journey? Do you know the people in the community who, yeah, I have friends in America that are in remission now? But it's just scary because you can be in remission, but then you could get another infection and you're back to square one. That's what really scares me about this illness, is that there's always a chance that it can come back. And what about, you know, things like jobs or ambitions in that field? Do you have, can you allow yourself to think about stuff like that? I hope to be driving one day because my seizure started at the age of 16. I've never been able to even. Be behind the wheel of a car. I've never been able to take one lesson. My seizures don't allow me. I think you have to be like one year seizure free or something, which is just sounds impossible to me right now, but I'm sure one day it'll happen and just. I don't know. I've never really had the chance to be an actual adult, if you know what I mean. I do. That's why I ask like I'm 22 but I never feel that age because I rely so much on. My mum for help. I mean even sometimes things. I mean, it's a bit embarrassing to say, but it's just all part of the condition. Sometimes I can't even like bathe myself or feed myself. And like, I just hope one day that I can be an adult and have my own home and drive. Just normal things that I never got to have. If I'd met you when you were 13 or 12 and I said, what do you want to be when you grow up? What would you have said? I would have said, um. Probably like a zookeeper or something like that. Or work with children. That was my main goal when I was younger, which I did do for a while and then I had to stop. But you know, I got to do it for a little bit, so I'm thankful for that. And I guess eventually everything gets subsumed into just this desire to get better, doesn't it? I just, everything relies on that. Everything like to be better. Hello. How do you decide what and when? What and when to put on social media? Do you, I mean, have you become a sort of a producer and an editor in your own head or do you have kind of I very much manage my own content. There are certain things that I get nervous to share still, like I am very raw about my seizures and a lot of people I get a lot of comments saying. Why is this being videoed? That's, you know, ridiculous. Why on earth would somebody film this? Yes, but I think you don't understand unless you're going through it like my it's not easy for my mom to video my seizures, but it's something that has to be done for. Either documenting or if it's a different kind of seizure, she videos it so we can show my pandas doctor that kind of thing and there's nothing else she could be doing. That's what people exactly don't understand is why isn't she helping? But there's nothing I can do. Like, yeah, what exactly are you supposed to do? There's certain things that you do straight away, like make sure I'm in a safe space, make sure my head isn't against the floor or something like that. But you know, in a seizure it is just a case of waiting. And so we do video, a lot of my seizures because. Well, another main reason is for me to watch afterwards, because I don't know what I look like when I'm having a seizure and it's scary having a chunk of time where you're not in control. And I think it's quite a human thing to want to see what was going on the time that you missed. So sometimes, quite often when the seizure's over and I'm feeling better, my mum will say, do you want to watch it? Because it's weird for me. Having that chunk of time where I'm not fully conscious and I think that's just like a human reaction. Really. To fill in the gap. Yeah, exactly. Because nobody likes having chunk of time is missing. It freaks you out. Hello. What? I mean, now you're completely used to it. This is where you use the word desensitized, isn't it? But when you watched back the first view that you'd done, how did that make you feel? Yeah, we have some videos from like. I don't know if we have any from 2016 anymore. I'm not sure where they went. But we do have some from like 2018. And it is weird to watch because the stuff that was so missed that doctors should have picked up on, like the size of my pupils in the seizures, we never even noticed. But then I look at these videos from 2018 where I'm seizing and my pupils are just huge and that is a massive sign of pandas. And so looking back on it, it's like a face palm moment, you know, And it's like, oh, how did we miss that? But nobody else noticed it either. It was never mentioned. And this is the most important part of what you do, really, isn't it? Because you've created an enormous body of work which allows people to avoid what you've just described. It gives people a. Exactly. What would you call it? A sounding board against which they can put their own experiences or their child's experience and say, oh, that could be us, that could be what's happening to us. Yeah, it. I do find it really emotional when I meet kids with it because I going through it as an adult is hard enough. But as an adult, you can almost make sense of it and you can understand the science behind it, where as a kid you just don't have a clue what's going on. And I I don't know, my heart breaks for them a little bit, but that's kind of, I'm kind of hoping that my social media is like a safe space for children that have it as well. It clearly is. What would you say to someone who hadn't come across you before perhaps it would stumbled across this podcast and is now thinking, gosh, that sounds very familiar that that sounds possible. That's maybe where we are. What would you say to them? What should, what should they do? I would say do a lot of research into the condition. There is a official pandas pans website which has a lot of info on there about the symptoms and how it can start the different causes and also where to find help and things you can do. I mean there is actually a section that says like OK this sounds familiar, where do we go from here and research? Specialists in your area, which is probably the hardest bit because there aren't that many. We have to travel to ours, which luckily for us is kind of doable if my health is good, but it's still not ideal. And what about, I mean parents obviously, but also teachers. If they've got a little mini EV Meg in their class, what sort of things should they be looking at? So a lot of, like, things that are quite missed in school are like kids being told off for bad behavior. Because pandas in kids can cause really extreme anger and meltdowns in classrooms. To the point where kids are throwing things and, you know, ripping things and trying to hurt themselves. And, you know, they would just get told off or sent out the classroom when actually there could be something much more going on. And other things in school are stuff like handwriting decline. So like someone who could have had really nice handwriting now writes like a three-year old because their brain is inflamed. And in children as well, stuff like like they could be fully toilet trained but they start wetting themselves out of nowhere. Nightmares, not really eating well. OCD behaviors, all that kind of stuff that I suppose would just be brushed off as a child. But they're all very classic signs of pandas in a child. You keep pretty busy, don't you? When you're able to. There's a book that there's clothing design, There's art. Yeah. All of which you can find at this Trippy hippie official.com. Yeah. And of course, your Instagram handle is trippy hippie. My Instagram is EV Meg, EV Meg. And my TikTok is this trippy. There we go, this trippy hippie. Final question. What's a mandala? So a mandala is a. It's a well, the classic shape of Mandala is a circle with loads of like intricate designs in the middle. And I believe it like represents the universe in a kind of way. But I find them super calming. I barely tick when I do them, which is amazing because I get some kind of, like relief from my ticks. And the fact that they take hours and hours as well give me something to focus on. And so I don't have to think about all the horrible stuff that the disease throws at me and I just get a break for a while. Yeah, I've been doing mandala since I was about 14, so I hope this doesn't sound weird, but you're a happy person. You come across as a happy person. Yes, when I'm myself like this and I'm on treatment, I am happy. And I've learned now that I'm possibly happier than I was before I got sick because I don't take a single thing for granted anymore, like getting up off this chair and walking out the room. I don't take that for granted because I've. Been in wheelchairs and I know that my body has been through a lot. So really tiny things are just so human. I they make me so happy now because like, it's just such a simple thing. But I know what it's like to not even have that. So really tiny things. I just. I take, I just yeah, I enjoy all of it. Thank you for talking to us today. Of course. Thanks for having me. Now.