Media Mania

“I just happened to turn on the television the other day and who did I see…YOU!”

The media.

Newspapers, magazines, television…we all come across different forms of media everyday of our lives, but how many of us actually get the chance to be in the media sharing an important message with the world.

I am one of the ‘lucky’ ones that have had this opportunity.

Let’s start at the beginning.

My first media venture came about last year. The Encephalitis Society put me in touch with someone from The Daily Mail who was interested in writing an article about anti NMDA-r Encephalitis.  A phone interview took place and a photographer was sent to the house.


At least I now know that modelling is NOT for me…

The article came out on the Tuesday when I was at School volunteering. At break time I passed the article around the staff room. The general consensus was that it was great to raise awareness, even in The Daily Mail!

But this was just the start.

About a year later I was contacted again by a News Agency. Now that the Encephalitis Society have expanded and introduced a new role for a ‘media man’, getting awareness raised in the media is much more straightforward.

This was my chance to tell ‘my story’.

I have learnt in recent times that the media like to put a ‘spin’ on everything. Memory problems were the route this article took. Of course, they needed photos to back up the writing so my Mum and I had our photos taken in specific poses. Our particular favourite was the “look confused” pose; glasses on, dictionary in hand, looking ‘confused’. Awkward!


The actual write up was muddled. It didn’t get ‘my story’ across as coherently as I wanted.

I spent the whole of the Friday that it came out in bed crying about how terrible the photos were and felt like my words had been twisted.

Looking back I can laugh.

As the Agency was in such a rush to get the article printed they did not give us much time to make amendments. However, thank goodness we could make some.

Anyone that knows me will know that this quote would not have been said by my Mum: “Our Elizabeth, usually so sensible and calm…” Thankfully this was taken out the evening before it was posted on the Daily Mail Online.

But the story was out there now…

The next venture came in the form of The Times Newspaper. A lovely piece with just one photo and a very brief summary of the illness and the effects it can have. Great.

It would have been good to have warning that it had been printed though!

Sat with my sister on the train and a boy sits down next to her.

He reaches down into his bag.

He opens his bag and pulls out a copy of The Times Newspaper.

He turns to the middle and looks up at me.

“Is this you?”

Indeed it was, slap bang at the top of the page a photo of me surrounded by old photos (including of one of me and Mum in our bikinis – cringe!).

All I am going to say about this is that it is a GREAT conversation starter.


This wasn’t just your average train journey though. This was a very special train journey. My sister and I were on our way up to Manchester. We were going to be on BBC Breakfast.

I got a call on Tuesday lunchtime inviting me up to Manchester to be on BBC Breakfast on Wednesday morning. A couple of hours later my sister and I were on the train travelling ‘Up North’ to be on the television!

Wednesday morning. We woke up at ridiculous o’clock to beautify ourselves (although by the time we were awake my Uncle was nearly ready for a full day at work…).

My Auntie, sister and I got in a special BBC taxi, which took us to the Media Centre. By the time we arrived I was so nervous I was visibly shaking.

We were put into the ‘green room’, it had a lovely selection of breakfast goodies for us to munch on whilst we were waiting.


Then it was time for hair and make-up. I can’t lie. This was my absolute favourite part of the whole experience.


Sat down in a big chair, huge mirrors all over the walls and more make-up that I had ever seen before. I loved it so much that in the time it took to do both my sister and Phillippa from the Society’s make-up mine still hadn’t been finished!

Being on TV was not what I expected. You walk into a room with about 6 cameras, a large red sofa and a glass table in the middle with a screen showing what is being aired. You are introduced to the presenters whilst the public are watching a documentary piece and then you are on air!

Here we are…


As you can see the questions were not what we were anticipating.

Asking someone with a brain injury what it is like to not remember your family is not ideal, neither is asking the sister what it was like when I didn’t remember…as Auntie Dorothy said “you couldn’t tell which one of you had the brain injury”.

Being able to get awareness raised on such a huge platform was amazing, and whilst the experience was nerve racking to say the least I am very proud of the achievement.

That said, for me, this was the end of any media mania.

It is all a bit too much, having your face (steroid puffy even when covered in make-up) plastered all over the news is not for me.

A week later we got a call from Pick Me Up magazine. Would I be interested in doing a piece about Encephalitis and my journey? The answer was no.

Instead my Mum took the opportunity to share her side of the story and put across the more medical viewpoint.

This ended up being my favourite article. Some parts may be over dramatised and the magazine may not be everyone’s cup of tea, but, finally I felt that the story was properly out there.


So that is my media mania.

I won’t say there won’t be anymore, but for the time being I think I will be reading newspapers, watching TV and flicking through magazines rather than being in/on them.

I feel so lucky to have had these amazing opportunities to raise awareness. If just one person out there scrolled through an online article, read through a piece in the newspaper or switched onto the BBC Breakfast programme and thought “those symptoms sound familiar, I am going to get in touch with the Encephalitis Society to get some support” I will feel like it has all been worthwhile.

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