County Durham TikTok star raising awareness of hidden disabilities

A TikToker is raising awareness about the reality of living with hidden disabilities after gaining millions of followers on social media.

Evie Meg, from County Durham, who was a finalist at the National Diversity Awards, has millions of followers for her @thistrippyhippie accounts.

The 22-year-old, from Murton lives with Tourette's, seizures and PANDAS - a rare condition which stands for Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections.

The online star is passionate about calling attention to these conditions, particularly PANDAS as is it is commonly misdiagnosed, starting conversations about hidden conditions.

Social media platform TikTok is commonly associated with funny videos, however, Evie Meg’s content can be graphic.

Videos show her pupils dilating, being unable to walk due to stiffness and even seizures. The purpose is to educate people on what different symptoms for the conditions look like.

She said: “I try and make them as educational as I can, because in Tourette's you have all the different types of tics and and they all have a category.

"I try and show the different types of ones because people know the swearing tic and they don’t really know any of the others."

The stereotypes those with hidden disabilities face are not just relating to Tourette's, which has resulted in the TikToker highlighting misconceptions surrounding seizures too.

“I realised there was these big stereotypes of seizures that people thought it was just people convulsing on the ground, foaming at the mouth," she said.

"There’s so many types of seizures. For example, there's absence seizures where I just look like I've zoned out.

"I started showing the different types, then I would show how they effect me, like the physical signs, so my pupils go really big and that’s because of the brain inflammation from the PANDAS."

It was only last year that Evie Meg was given her PANDAs diagnosis.

She added: “Obviously now that I have the new diagnosis of PANDAS I’ve started to spread awareness on that because it’s such a silent disease."

Despite this, the disability advocate shows how strong and powerful people can be regardless of adversity. Alongside her awareness videos, there are regular posts of Evie Meg doing gymnastics, another one of her passions.

"I show what I can do just to inspire people and show them that you can have disabilities and you can still be really powerful and you can still do things and be really talented," Evie Meg told ITV Tyne Tees.

Fast forward 12 months from her PANDAs diagnosis, and she was recognised at the 2022 National Diversity Awards where she was a finalist in the positive role model category.

She said “It’s amazing. I just got an email and I saw the word award and I thought 'What’s this?' and I looked at it and was like 'woah this is kind of big."

She added: “It was such a nice surprise, it literally made my day I was so smiley. I was just baffled almost that I’d actually been nominated  and thought of in that way. I was a bit emotional actually."

Evie Meg hopes 2023 will be the time to start to write a second addition of her book ‘My Non-identical Twin’.

While her first book focuses on how Tourette's can change your world, Evie now wants to focus on PANDAs disease.

Over the next twelve months, she hopes to use her social media to continue giving those with hidden disabilities, particularly PANDAs, a voice.