TikTok star's videos on rare disorder reach millions

National World - Broadcast Video

TikTok and Instagram star Evie Meg - thistrippyhippie - has built an audience of millions bringing attention to her autoimmune disorder PANS/PANDAS and talking about her Tourette's Syndrome diagnosis - while still taking the time to have some fun.

Transcript

00:00 I remember the first time I saw someone else having a seizure.

00:02 It was really shocking and it was like,

00:04 oh my goodness, is this what it's like

00:06 for the people who see me have one?

00:08 It kind of started growing very rapidly in 2020

00:11 and I think that's because everyone was in lockdown.

00:13 So everyone was on their phones

00:15 and social media was sort of at its peak.

00:19 - We're here at the home of Evie Meg,

00:21 one of Britain's most influential social media stars.

00:26 Let's have a chat with her about our life,

00:29 about TikTok and YouTube,

00:31 and about what she's got planned for the future.

00:33 The whole point of this is that you raise awareness

00:36 through your social media channels.

00:37 - Yeah.

00:38 - Can you tell us about them

00:39 and the following that you've got?

00:42 - Yeah, so I would say my main platforms

00:46 are TikTok and Instagram.

00:47 I do have a YouTube channel,

00:49 but obviously it requires longer videos

00:51 so I don't post as often.

00:53 But I do post on TikTok every day.

00:56 - And where do you stand now

00:58 in terms of numbers of followers?

01:00 - 16 million on TikTok, which is insane.

01:05 Like you can't really imagine that amount of people.

01:08 But it is lovely

01:10 'cause we have a really nice community online.

01:12 And some of it's people who have similar struggles to me

01:17 or the same condition.

01:18 I've met a lot of the people with the same condition

01:21 and there's a huge comfort in that,

01:25 which I think not many people can understand,

01:27 having someone who has the same condition as you

01:31 because it is quite unknown

01:33 and I had never heard of it until it was brought up to me.

01:38 And so it's definitely very comforting,

01:42 the community that we have online, it helps me a lot.

01:46 - Evie, tell me what you're feeling.

01:49 - I don't know.

01:55 I do a lot of online advocacy work

01:58 for my illness and disabilities

02:01 and just raising awareness

02:02 and helping people get the name out there.

02:06 - Are you angry or are you upset or frightened or?

02:09 - Everything.

02:12 - Everything, okay.

02:13 - So I have autoimmune basal ganglia encephalitis.

02:17 - Oh, that's one.

02:19 - Yeah, it's essentially inflammation of the brain

02:24 in a specific part of the brain,

02:26 which is the basal ganglia.

02:27 And it's essentially,

02:30 the immune system is basically under attack

02:34 and then it attacks the basal ganglia,

02:38 which inflames it and causes loads and loads of symptoms.

02:42 It's quite a long list.

02:44 So it can mimic psychiatric symptoms.

02:46 So it can often look like mental illness

02:49 when it has a completely different cause.

02:51 Also seizures, movement issues, like mobility issues.

02:56 So I don't walk very well.

02:58 Tics.

03:00 Well, in the beginning, when I first started TikTok,

03:03 it was musically at the time

03:05 before it had transitioned into TikTok and that was 2016.

03:08 And I was just doing sign language videos

03:12 'cause I was learning British sign language at the time.

03:15 And I really enjoyed signing along to music.

03:18 And then my seizures also started that year.

03:21 I didn't have a diagnosis or anything back then.

03:24 So I would, I think it was only around 2016

03:28 that I started briefly mentioning it on musically,

03:30 just saying, "Oh, I've had a bad day today.

03:32 My seizures have been really bad."

03:33 And that was that.

03:35 And I didn't have that many followers.

03:37 So it was almost quite nice

03:39 'cause it still felt like nobody was really watching,

03:42 but I was still telling someone, if you know what I mean.

03:45 And then 2018, I started having mobility issues.

03:52 And I lost, so from the waist down,

03:54 I was paralysed for a month.

03:55 And obviously because that was such a drastic thing

04:00 in my life, I did start,

04:02 started documenting some of it on musically.

04:04 And so I gained quite a bigger following then.

04:09 So I went up to like 100K, that kind of thing.

04:11 And that was a massive milestone.

04:13 And then I started sharing with them

04:16 when I started being able to take a few steps,

04:18 that kind of thing.

04:19 And then it kept going from there.

04:21 But then in 2020 was when it all really blew up.

04:24 And I started sharing more about my,

04:26 like the Tourette's side of things.

04:27 And it just went mad really.

04:30 But it was just for fun in the beginning.

04:32 Also things like rage attacks,

04:34 which is like uncontrollable,

04:36 sort of sudden outbursts of anger,

04:39 and also regression as well.

04:41 So sometimes people with the condition

04:43 can act a lot younger than they are,

04:46 or they can have episodes

04:47 where they act like a toddler, for example,

04:50 which is quite strange to witness.

04:51 And then sort of quite scary things

04:53 like hallucinations and things.

04:55 - So what was it like then to come down

04:57 and check your channel each morning

04:58 when you got, you know, get out of bed, check channel,

05:01 there's an extra 5 million or whatever?

05:04 - Yeah, it was really strange.

05:06 I didn't actually know it was possible

05:07 to grow followers that quickly.

05:10 And it just, it just seemed a bit surreal.

05:14 Like it started to feel like

05:15 it wasn't a real number anymore.

05:17 Like you were just watching it go up and up and up.

05:20 And I didn't know what to think of it

05:22 because obviously it was an amazing thing.

05:24 But then the more people that come in

05:27 and the more people that watch your videos,

05:28 the more hate that it brings as well.

05:30 So that was quite hard to deal with

05:33 because it was happening so quickly.

05:35 I do still get quite a lot of hate.

05:38 I do still get quite a lot of hate.

05:41 And it usually,

05:45 there's usually a very similar theme.

05:48 If it's regards to my tics,

05:51 then it's that they're fake

05:53 or that I'm doing it on purpose.

05:57 I don't often get comments on my seizures,

06:04 but there is the occasional, like,

06:07 why would you post this?

06:08 Usually just people not understanding

06:09 why it would be posted,

06:10 which I do understand because it is very vulnerable.

06:13 It's not very nice to watch.

06:15 But the way that I look at it is like,

06:17 if you saw someone in the street having a seizure,

06:20 I want people to be able to recognize it and think,

06:22 oh, I've seen this in a video before.

06:25 And so I know what it is.

06:26 I remember the first time I saw someone else

06:28 having a seizure, it was really shocking.

06:31 And it was like, oh my goodness,

06:32 is this what it's like for the people who see me have one?

06:35 But then also I just think it's

06:39 a really important thing to show.

06:41 Obviously there are seizures that I don't show,

06:44 but the ones that I feel able to,

06:46 then I do post them.

06:47 And a lot of people can't understand that,

06:51 which I suppose I do partially understand.

06:53 - Do you think it's having an effect

06:54 that you're posting all of this?

06:57 - I like to think so.

06:58 I mean, I do get a lot of messages

06:59 saying that it's made a difference.

07:01 It's quite difficult to explain

07:03 because sometimes I don't fully know

07:05 how to put into words how it feels.

07:07 But I suppose usually when it starts

07:10 and I know that a seizure's coming,

07:11 I start to feel really far away from everything.

07:14 And I almost don't feel as if I'm in my body.

07:19 And often a warning sign is I get really sharp pains,

07:22 sometimes in my eyebrows or like literally behind my eyes.

07:26 Like an actual pressure in my head,

07:32 which I suppose makes sense 'cause it is inflammation.

07:36 So I start to feel really far away.

07:38 And then my pupils usually dilate a lot,

07:43 which is a sign of brain inflammation,

07:46 which was actually one thing that led to a diagnosis.

07:49 I start to have a lot of sudden jerks,

07:53 which aren't the same as tics, they're very different.

07:56 And then during my seizures, I can usually hear people,

08:02 but it sometimes doesn't really sound like English,

08:05 like I can hear the words,

08:07 but I can't really process what they're saying.

08:10 And often in a lot of my seizures,

08:15 I sometimes go into like sort of a bit of a trance

08:18 or sometimes I'll hallucinate during them as well.

08:21 It started about nine years ago when I was 14.

08:25 And then I didn't get diagnosed till eight years later.

08:30 So it started about 2014 when I was in school.

08:35 And then I was only diagnosed last July

08:39 and I just show loads of different sides to it.

08:41 So I'm diagnosed with Tourette's as well.

08:43 I was diagnosed with that about three years ago.

08:45 And so it's a bit of a mix between like Tourette's and tics.

08:51 And then obviously all the things that encephalitis causes,

08:54 because it's not as rare as people think it is,

08:58 but like pretty much no one's heard of it.

09:01 So I just try and get the name out there

09:04 and make people aware of what it can do

09:06 and what it can look like.

09:08 But then also trying to keep things

09:12 a little bit lighthearted as well.

09:14 - Oh, I'm standing on Rice Krispies.

09:15 Snap, crackle, dead.

09:17 - Can you tell us as well about the opportunities

09:19 that posting has brought for you?

09:22 'Cause I know you've traveled a lot.

09:24 - I went to Luxembourg last year

09:26 because I'd gotten an opportunity to speak in front of,

09:30 I think it was an MP there,

09:33 about disabilities in the workplace

09:36 and how things could change.

09:37 I was at an awards ceremony last September.

09:41 I'd been nominated for a National Diversity Award,

09:44 which was, I thought it was an amazing evening.

09:47 There was lots of inspiring people.

09:48 - Just a bit of name dropping.

09:50 - Yeah.

09:51 - Which stars have you met?

09:53 - Ooh, Max and Harvey.

09:55 Yeah.

09:57 It's actually because of them

09:58 that I get to meet some really cool people.

10:00 So like earlier this year,

10:02 we went and did some training with the Cirque du Soleil cast

10:06 and the acrobats and stuff.

10:07 So that was really cool.

10:08 My main goal is to make some changes

10:13 in the way that PANS/PANDAS,

10:17 Basal Ganglion Encephalitis, is looked at and treated.

10:22 So still we all have to go private because,

10:26 I mean, the NHS is incredible

10:29 and I love the work that they do,

10:30 but for this condition, it's not recognised.

10:34 So I'm paying thousands and thousands

10:38 to get blood tests and treatment and medication.

10:43 And I pay for it all with my own money,

10:45 but obviously, how long can I do that for?

10:50 And obviously other people who have young kids

10:53 who have started showing signs of this condition,

10:56 they can't always afford to even go to a private specialist

11:01 'cause there aren't any specialists on the NHS.

11:03 - And what about in your own life and your own platforms?

11:08 Do you have any personal goals for you?

11:10 - I suppose content making is quite a big passion of mine.

11:15 I do really enjoy it, even though it is a job now,

11:19 but I still enjoy it.

11:20 I suppose keep growing my online community if possible.

11:24 Keep going to opportunities wherever it takes me.

11:27 And I did publish a book in October, 2021,

11:33 and I would love to bring out a new one

11:36 'cause obviously a lot has changed since then.

11:39 When I wrote that book,

11:40 I didn't have some of the correct diagnoses.

11:43 So writing another one is a really big goal of mine,

11:47 which I'm hoping to get done.

11:49 (gentle music)

11:52 (gentle music)

11:55 (gentle music)

11:57 [BLANK_AUDIO]

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