Interview

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Jessica Taylor-Bearman is the bestselling author of A Girl Behind Dark Glasses, which follows her journey living with severe myalgia encephalomyelitis (ME) or chronic fatigue syndrome (CFS). She chats to us about her second book, A Girl In One Room, and why she hopes it will provide a voice for other sufferers

 

How would you describe your life before you became ill?

“I was full of life and I enjoyed every moment of it. I did lots of sport, lots of music and was very creative. I loved being outside and spending time with my family and friends.”

Tell us a bit about your journey with ME.

“I got a flu virus in 2006 [aged 15]. My whole class went down with it and it would mean you'd go dizzy and collapse when you tried to get up. [But] even when the virus was gone, I didn't feel better.

“My first symptom [of ME] was feeling so exhausted that I couldn't get up the stairs to my classroom. Within a few months I couldn't manage my lessons and crashed [out] every time I got in the car. I kept trying to fight it and keep pushing because I really didn't want to be ill, but I then became house bound and, a few weeks later, hospital bound after catching more viruses and infections, but my body wasn't able to fight it off.

“Any light burnt my eyes so much that I had to wear dark glasses and my sound sensitivity was such that I couldn't cope with my dad whispering because it was too loud. I could hear everything. I ended up being tube fed and not being able to move. It felt like my body had been hit by a double decker bus full of exhaustion - a type of exhaustion that physically hurt. After four years of being in hospital, I was discharged, but I wasn't better and the rest of the world had moved on without me.”

How did ME affect your everyday life as a teenager?

“It started off by affecting my concentration. I couldn't socialise because if I was too fatigued, I couldn't understand what my friends were saying. It hurt to think. For me, it was a big deal when I had to stop school. I was an avid learner and loved school but I couldn't sit up straight in the classes; I was just slumped with my head on the desk and teachers shouting at me. 

“I wrote a charity Christmas single which was recorded by one of my childhood friends in 2014. When she came to show it to me, it was the first time I'd seen her in eight years. She'd gone to uni and was bouncing around, full of life. It was only then that I realised how much I'd changed. It was as if I'd gone to a war zone and come back a completely different person due to the ME; it was almost sucking the life out of me.” 

You spent four years in hospital. What help did you receive during this time? Did you feel like you had support from doctors?

“I had a lot of doctors who really didn't understand the severity of what was going on. It started with them leaving me without any nutrition for three days because they thought that I would just start eating because I was hungry. I wasn't able to and my body completely shut down. I was nearly sent to a locked ward because they couldn't understand what was going on. I remember the doctors and nurses being puzzled and the physiotherapist trying to do Graded Exercise Therapy, which made me terribly ill. But I also met lovely nurses and a lovely doctor who literally saved my life on multiple occasions.”

How did your battle with ME continue after you were discharged from hospital?

“I think the common misconception when you are discharged from hospital is that you are 'better'. But that wasn't the case for me because ME is a neurological chronic condition which fluctuates. In some ways I would say there were even more emergencies when I came home. I had a weakened immune system and was in and out of hospital constantly. I also wanted to learn to sit up and stand for myself. So I had to train my muscles to connect to my brain to relearn how to sit up without collapsing. The same went with learning to stand up; it always felt like one step forward and three steps back.

“Now I am still suffering from ME and my life is more limited than general lockdown has been for most people, but I'm learning to live within my boundaries; I just pay a price health-wise for everything that I do.” 

What inspired you to write your first book, A Girl Behind Dark Glasses?

“My first book A Girl Behind Dark Glasses was really a hope in the darkness. From those years of not being able to communicate, I realised how vital it was to then use my voice to give a voice to others. I’ve always wanted to be an author and my gran always used to whisper to me that we were going to 'write a book together'. She sadly passed away before we got to write it, so I used my diary entries I'd kept to write my story.

“But that first book only told part of my story and I knew I wanted to tell the rest of it. When I went home I lived in a world of one room, which I couldn't leave. I wanted to show that hidden life because I am just one of the millions missing from society due to ME and I wanted to be a voice for them.” 

What is your proudest achievement?

“I have so many, but a lot of them seem really bizarre. I'm really lucky because I have now got a beautiful daughter, which was something I was told would never happen for me. I'm most proud that I survived throughout the odds; I kept going when it looked like my body wouldn't be able to. I'm proud that I can now sit up unaided and that I stood up, because doctors told me that I wouldn't be able to do that and the best they could do was 'get me hoisted into a chair'.” 

ME can vary from mild to severe, but what would your advice be for those who are also suffering?

“Listen to your body and trust your gut. There is not a lot of biomedical research into ME, which I desperately hope will change, so the patients become the experts. What I may be able to do, another won't be able to and vice versa; you know your capabilities the best.”

What are your hopes for the future understanding and treatment of ME?

“I'd like two different things. Firstly, I really hope that Graded Exercise Therapy is completely ridden of. It was so harmful to me and took me years to recover from the relapse it caused. I also really hope that the silver lining to the pandemic is that researchers will start looking into ME so they can understand it. Biomedical research is everything.

“But from society, I just want to be seen. I don't expect people to understand what it is like to lose everything and to suffer intently every day. But I do want to be represented and heard.”