Hi everyone! We are nearing the end of GeekDis, and I am happy to bring you my final interview of the event. Earlier this month I reviewed A Girl Behind Dark Glasses and the sequel A Girl in One Room by Jessica Taylor-Bearman, and she joins us today to talk about her books, how they were received and the representation of ME/CFS in pop culture.

Hi Jessica, thank you for joining me today for GeekDis 2022! Could you tell us a little about yourself?

Hello Heather, thanks so much for having me! My name is Jessica Taylor-Bearman and I am an author who is chronically unwell. I have been suffering with M.E. for the past 16 years and have written two books about my experience of living with such a misunderstood disease.

You’re the author of two books about living with severe ME, A Girl behind Dark Glasses and A Girl in One Room. Can you tell us how these came about?
When I first started suffering with M.E., I became severely unwell pretty quickly which was incredibly scary. My whole life seemed to be crumbling away in front of my eyes and there was nothing I could do about it. After catching multiple infections and viruses, I lost the ability to move, speak or eat. I was only 15 years old when I was first admired into hospital and I remember being scared.

Even though I was incredibly unwell at the time, I remember clearly not wanting the times that I was in hospital suffering so severely to become forgotten years in my life. I also realised that to a lot of my friends, I had just fallen off the face of the earth, as their lives had carried on.

I started to make a diary with the help of my parents, which I called Bug. It was at first made through code because I didn’t have the energy to say sentences and had lost the ability to speak. It was then continued later through my digital microphone which was clipped onto me all the time.

It had always been my dream to become an author but without being able to hold a pen or focus on a laptop, the only way I could imagine doing it was through my diary.

After many years and when I finally left hospital, I started putting all the diary entries together again and that was the foundation for my first book A Girl Behind Dark Glasses. I wrote the rest of the book over a long, long period of time, typing chapters down on my smartphone. I really wanted to tell the story so everyone knew what happened when I just disappeared off the face of the earth. I was also determined to make sure that other severely unwell sufferers didn’t have to go through the hell that I did. If I told my story and it educated one person about the reality of M.E., then it felt like a success.

We are led to believe in society that when a person leaves hospital, it is because they are better. This wasn’t the case for me and that is where the idea for A Girl in One Room came from as a sequel to Dark Glasses. Me leaving hospital wasn’t the end of the story. So much happened when came back into the world and I wanted to get across the idea had left as a fifteen year old and returned backbone three months before my twentieth birthday. My friends had finished school and gone onto university, my baby sister was setting her GCSEs, but my life had sort of stood still, I lived in a world of one room. I wanted to tell of what happened next.

What has the response to your books been like?
The reaction to my books has been really overwhelming. With A Girl Behind Dark Glasses, I feel I went out there to share my story. I wanted to be a voice for the voiceless and I wanted to be an advocate for the M.E. world. People had seen me through a YouTube video I had made called The World of One Room and also through my blog of the same name, but no one had heard about what I’d been through. I wanted A Girl Behind Dark Glasses to change that and it really did.

The chronically ill community online have championed it and really enabled me to make my dream come true. It became a bestseller and won The People’s Book Prize for Best Non-fiction.

A Girl in One Room was quite difficult to write for me as it was a bit of a rollercoaster, but I’ve been so grateful for the love it has received!

In 2015 you contributed to a film called Unrest by Jennifer Brea, could you tell us more about this?
Jen had first seen my youtube video The World of one Room and then followed my facebook page of the same name, which is where I shared my journey in the form of a blog. She then approached me to become a part of Unrest, which was really exciting.

It was filmed over a few years and I opened my little world of one room up to them. Our goal was always to raise awareness about M.E. to people who had never heard of it before.

It’s very strange watching it back now because I feel like I’m a difference person now. It was such a good experience to be a part of and I really feel that it’s an important watch.

What are your thoughts on the representation of ME/CFS in pop culture?
I feel like the representation of M.E./CFS has been pretty rubbish in pop culture but it is starting to improve. I think that one of the biggest problems that caused this has always been how society has viewed M.E. as a disease. It’s been misunderstood for decades and the idea of it being ‘yuppie flu’ really has caused it not to be taken seriously, which has affected the representation. There were only a handful of books which accurately depicted M.E..

However having said that, I do believe that it is starting to change. I’ve seen more books being written by M.E. sufferers about their suffering and also more fiction books created with M.E. sufferers and that is really exciting. So I’m feeling positive that this will continue!

Do you have any disability book recommendations?
In this past couple of years, I’ve really started to see more incredible disability books. A few of my favourites that I have recently read are:
A Bird Hits Glass by Beate Triantafilidis (about someone who becomes ill with M.E..)
The Secrets of Haven Point by Lisette Auton (this is absolutely brilliant)
Toby and the Silver Blood Witches by Sally Doherty (this one has an M.E. sufferer and the protagonist is a young carer which I love)

And then one of my all time favourites is The Diving Bell and the Butterfly by Jean-Dominique Bauby.

Who are some of your favourite disability advocates and bloggers?
I have so many favourite disability advocates, which makes it hard to choose a couple!

When it comes to disability advocates with M.E. then I’d have to say that the wonderful Pippa Stacey from @lifeofpippa is a top notch good egg and also Alice Ella and Mindfully Evie on Instagram are wonderful too.

I also love Nina Tame too because her reels she makes on Instagram and the post she shares on Facebook are just incredible.

Is there anything you can tell us about any future projects?
Well, I can tell you that I have written the last in the A Girl trilogy, which is very exciting. I’m not quite sure when that is coming out but it is with my publishers now!

I have also just finished the first draft of my first fiction book, which I’m really pleased with. It has been a labour of love and a complete different challenge to my other books but a very positive one.

Thank you, Jessica for taking the time to talk to us!

Thank you for reading my interview with Jessica! Please do take the time to check out Jessica’s website, blog and her books on GoodReads. You can also follow Jessica on Facebook, Twitter, YouTube and Instagram!

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