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.
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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]