Tag Archives: ME

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.

“Do something you love. Disabled or not, it’s good for the soul!”

Jenny Brownlees is a freelance fashion journalist and stylist. She has ME, and went through a lot of tough times to get where she is now. One thing she found helped her was to follow her creative heart. Here she talks about her experiences.  Jenny on holiday - standing on a balcony with the blue sea behind her

I was 16 when I became unwell. Enjoying life and school, becoming unwell in my teenage years hit me hard. I was very creative both in and outside of school. Happiest in art and textiles classes when doodling, making a mess, sewing, designing, I was obsessed with ‘making’ in all its forms. I loved every aspect of fashion and art. It meant so much to me, and was a huge part of my personal identity.

In the years that followed me falling unwell, I dealt with an ‘invisible illness’, many misdiagnosis’, followed by an 18 month wait for the right diagnosis that was filled with anxiety, panic attacks and depression, as well as feeling so poorly that I can’t even begin to put it into words.

I found I was suffering with ME, and quite severely too. I could list all my symptoms, but I would need the entire content of this blog to do it, so I won’t! After such a long struggle for the right diagnosis came six years of suffering, where I was bedbound for months on end, then housebound for years that seemed to both last a lifetime and pass in minutes. I felt utterly terrible, both physically and mentally.

I, like most had a plan, a path I thought my life would follow; do well in my GCSEs, do well in my AS and A Levels, go to university then get a good job. Easy, right? This didn’t happen as planned, and to say I was devastated would be an understatement. I now write for a living but words fail me when I try to convey my feelings about those years to others.

There is a piece of advice I will always remember from this time, trying to get through a school day I’d forced myself to go into (which as usual had ended up with me having to being taken home.) A lady who was a carer for disabled people, seeing my distress told me “Everyone has their own path. There’s not one right way. You will get to where you want to be, you just might take a different route, and that’s ok.” At the time I found it very hard to believe, now looking back, nearly 10 years later, it sticks with me. Hindsight is a funny thing.

The thing I love most about art, as well as its broad spectrum, is that creativity has no bounds, it can’t be measured. If you make something, in any capacity, you’re an artist.

What you’re creating doesn’t have to be a masterpiece. A love for card making could mean once a week flicking through a craft magazine and thinking about something you may try and make one day, or not! Still, you are engaging in something you love and I think that is a must for everyone, disabled or not. It’s good for the soul!

Photo of a model wearing pressed flower brooches on her coatBeing creative gave me something to get up for. Flicking through a fashion magazine kept me in touch with a world I loved.

My health, I didn’t have. But time, I did. Time I couldn’t use exactly as I wanted, but if I was adaptable and tried to manage my expectations (I’ve always been a perfectionist and hard on myself) I could feel proud of my days ‘work’. Even if it’d been a single scribble on a pen pad. Due to feeling constantly exhausted, I would say things took me double the time but that would be generous, more like five times as long. I read a quote recently that summed this up perfectly: “So what if it takes you ten years, ten years will pass anyway whether you do it or not, so start now.”

I’m not saying it’s easy. The skills I learnt were built upon slowly, over six plus years, and I’m still learning now, but it gave me something other than my own plight to think about! Of course there were days, months even when I did nothing but lie in bed, but as soon as I did have a slither of energy, I tried to put it to good use. Even if you can do a tiny thing each day, a creative hobby, or whatever you love, it can really can give you a sense of purpose and worth.

I began thinking about what I could do with my time. I had always wanted to try photography, I was actually booked onto a course to do it in my free time outside of school, but had to cancel this when I got unwell. Photography was something I could do literally from my bed, I would photograph objects in my room at first! And this wasn’t with an expensive camera, just a standard point and shoot I’d had for years. I didn’t do it every day, but it progressed. I would take photos out of the window and eventually in the garden. Whenever I felt well enough I’d read online about DSLR cameras, and (over years) learnt to understand and operate one long before I bought my ‘real’ camera.

People always comment now, when I go for jobs or discuss my illness, that it doesn’t matter that I didn’t go to university, or do this and that I had planned, they can see I kept up what I could and that shows my enthusiasm. We are so lucky in this day and age, learning doesn’t mean having to go to a course or even go to the library to search and gather information, which takes time and energy I didn’t have.

The internet (once I built up my tolerance to working on the computer) was a huge saviour in my illness, information is so easily accessible. You can learn by simply asking Google! Youtube is an amazing learning tool, you can learn just about anything on there, and replay the video 300 times if you need to, stop and start and take it at your own pace. The same for free online tutorials. I played around with Photoshop for years, nothing formal, just trial and error, and now it’s such a great skill I use all the time. The same with my photography. The irony is if my ‘plan’ had have come true and I never got unwell, as I wished so many times, I may not have learnt something I now love!

I tried to keep up a few ‘hobbies’ so if it wasn’t a photography day, it may be a writing day. I wrote about how I was feeling, read online forums, The Fashion Spot, was a favourite. I didn’t even contribute by commenting, I just read the forums comments and felt involved, listening to others opinions was my way of keeping engaged with the goings on at magazines etc.

After many years, and many ups and downs, I began to feel better and my energy levels improved. I did some free writing work online for blogs and a few small magazines, volunteering to do this meant no scary deadlines if I wasn’t feeling well, but most of all I enjoyed it. Writing about fashion didn’t seem like work for me, even if it took me a long time to write one article. I kept up my photography and added my skills to my CV.

Pink t-shirt hanging up with lots of coloured beads suck to the frontCraft turned into career for me, I now write a weekly DIY column for an online magazine, where I make an item, then photograph it. I also write fashion and lifestyle articles for a number of different magazines. I know this is rare and I am so lucky to be at a place where I can do this, but it didn’t happen overnight. I think it shows though, anything is possible, disability or not.

I would say to people reading this that everyone is good at something. Everyone. Try things, don’t let yourself tell you you can’t; yes there’s a million reasons you shouldn’t do something, but listen to the one that says you should. Find your heart’s desire, and incorporate it into your life in some way.

I would suggest watching TED talks, they are so inspirational! Zach Anner on Youtube will make you laugh – ‘Milestones’ is a favourite video! Read Dr Viktor Frankl’s ‘Man’s Search for Meaning’, he will make you feel like you can do anything. Surround yourself with positivity. Don’t give up.

Feeling inspired to get creative? If you would like to see what I’m crafting next, writing about or creating, and a lot of pictures of my dog, you can follow me on Twitter and Instagram as @jennybrownlees.

Disabled models in the fashion industry – #100days100stories

This is a guest post from disabled model Hayley-Eszti.  She is sharing her story as part of our 100 days, 100 stories campaign

When I was struck down with a severe case of ME in my late teens, I never thought I’d be where I am today. To go from being paralysed, unable to move or talk, reliant on carers, to where I am now – able to campaign for awareness of ME and disability in general, as well as becoming a disabled model, it’s all quite overwhelming.Young woman sitting in a wheelchair on a beach

I remember when I first realised my illness was so severe that I needed to use a wheelchair and mobility aids, it was scary and it was hard to accept. You never expect it to happen to you, especially because I had always been so active growing up, but that’s the thing about the disabled population, it’s the world’s largest minority of which anyone can become part of at any time. The more I began to accept my situation the more I wanted to make a positive out of a negative.

I started to see how under represented we are as a community, particularly within the fashion industry and media. I’ve always had a big interest in fashion, and it angered and upset me that disabled people were rarely, often never considered within advertising and marketing. Online shops, catwalks, even editorials and faYoung disabled woman modelling a white dress, sitting in a wheelchair in a gardenshion photographers were missing out on this huge market. There are over 11 million people with a limiting long term illness, impairment or disability within the UK. All of them need to wear clothes, so the question I always found myself asking was, why was nobody considering such a large group of people?

We need people to look up to, people we can relate to, and we need to see REAL disabled people, no gimmicks or able bodied models posing with some crutches for a couple of hours.

I began campaigning for more disabled models to be used within the fashion industry, and I started creating my own photo shoots which I put on my blog. The response was amazing and I soon started to receive more and more comments from people saying I should look into modelling myself. I’d been campaigning for it, so I thought why not put myself out there and try and become one of the peoYoung woman standing on a beach next to a wheelchairple I so desperately wanted to see being represented and treated equally? We don’t want to be treated differently and we are not asking for special treatment, just to be respected and treated as equals. I’m doing this to show that we are not invisible and we do matter. I want to show that we can still have dreams and fulfill them even if we do have limitations.

Something worth pointing out is that disabled models do have a place and they do resonate with people. A perfect example of this is Scope’s recent Retail stock appeal featuring Jack Eyers, a disabled model. It was their most successful retail appeal, generating 1.2 million donations, whilst also raising the issue of the lack of disabled people in the media and fashion industry. You can’t argue with figures like that.

My hope for the future is for disabled models to be the norm, for new generations to grow up regularly seeing disabled models. It’s time to make a change.

Read more stories and find out how you can get involved in 100 days, 100 stories.