Shelly, a young disabled woman, smiles and laughs

YouTube gave me back the things I lost

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This story is part of 30 Under 30.

 

Shelly is a YouTube vlogger. She was diagnosed with a range of complex medical conditions at an early age and spent most of her childhood at home, in bed. She has recently been diagnosed with Ehlers-Danlos syndrome (EDS).

For 30 Under 30, Shelly talks about how the internet, vlogging and YouTube have allowed her to regain a social life.

I’m a show off. Ever since I was five, I wanted to be an actress. I wanted to be on the stage. Not on TV or anything but on the stage! I saw musicals and stuff when I was a kid and I was like “I want to be up there! I want to do that!”

To have to give that up was difficult.

I got sick when I was seven years old with a stomach problem. I just thought it was stomach flu but I never really got over it. Then at 13, I had to drop out of school when I was diagnosed with Myalgic Encephalopathy (ME) which slowly, steadily got worse.
It just drained the hell out of me and gave me multiple problems at the same time.

Then, at 15, I was diagnosed with Multiple Chemical Sensitivity (MCS) which meant that I couldn’t take medication.

Video editing software showing an edit of one of Shelly's videos

Losing the life I was meant to have

I was not happy at all. I didn’t go out, didn’t go clubbing, didn’t meet boyfriends and girlfriends, I didn’t meet friends, I didn’t have all the kind of firsts you’re meant to have.

I didn’t have any friends because the only friends you have at that age are school friends aren’t they? I couldn’t even hang out with them on the weekend because I couldn’t get out of bed.

I became a loner really fast.

I got the internet in the end and met friends. Then I found a group of young people with ME and the internet opened me back up to having a social life. It wasn’t a physical social life as I still couldn’t get out of the house, but at least I was talking to people again!

I’d become really shy because I didn’t know how to talk to people. Being socially isolated, I hadn’t learnt how to talk as an adult and was still stuck as a 13 year old in a 21 year old body.

Shelly lies in bed typing on her laptop.

Becoming a vlogger

One day, I came across YouTube. I was hooked and came across English vlogger Carrie Hope Fletcher. I was looking at her videos, the way she edits and makes videos made sense to me. So I just started making videos randomly! I then found out about BookTube via a fellow ME Booktuber and friend, Daisy (AtThousandLivesofDaisy). That’s when my two interests came together – books and vlogging!

Benefits of vlogging

YouTube is a great platform and vlogging is a great way of opening up to the world without having to fit to parameters. You can do it at five o’clock in the morning, you can do it on your phone, you can do it without all the tech wizardry. I edit on Windows Movie Maker, I’ve never bought a piece of editing software in my life, I’ve never bought anything in my life to do YouTube. You literally just do it and start talking.

It’s a great way to spread awareness. You could vlog your day and show how your illness affects you. Being disabled, being bed bound, being chronically ill, you are limited and kind of stuck in your world sometimes. Vlogging just opens the world.

It’s a great way to take your mind off of life. I haven’t been doing very well so this has been my outlet. I can’t go out and do the things I want to do so this is my version of going out, talking to people, going to book groups and things like that.

This is what illness looks like

I think it’s great when disabled vloggers talk about their impairments on YouTube. You are showing real life and what it takes to get up out of bed and get ready and have as much of a “normal” day as possible like everybody else does. The only way people are going to notice is if you show or tell people. Otherwise you’d just be in the corner, in the dark, where nobody can see.

I don’t talk about the bad times, I don’t want to. I’m British with a stiff upper lip. Keep Calm and Carry On! I try to put a positive spin on things. I don’t want to sound like I’m a grumpy person moaning all the time but I’m sick. I suppose it’s just being honest and showing people that this is what illness looks like, don’t ignore it.

Shelly is holding a book and has a finger to her lips to signify that she wants someone to be quiet.

Shelly is sharing her story as part of our 30 Under 30 campaign. This is where we are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Read other stories from 30 Under 30.

Visit Shelly’s YouTube page or follow her on Twitter.