Published on 25 February, A Girl In One Room is the follow-up to Jessica Taylor-Bearman’s best-selling YA memoir A Girl Behind Dark Glasses, continuing the story of her remarkable journey with severe myalgic encephalomyelitis (M.E).
A Girl In One Room documents Jessica’s experience of returning home, after four years in hospital, to a world changed beyond recognition. I had the privilege of being the first person outside of Jessica’s family and publishing house to read it, and it really is a remarkable story of trauma, resilience, grief and courage, which powerfully shines a light on the reality of life for people with severe M.E.
Jessica sat down with me over Zoom to talk about how young women with M.E are treated, and how she’s still processing the medical trauma that her experiences have left her with.
SG: Both books contain a huge catalogue of your different experiences – both positive and negative – with doctors and other healthcare professionals. What do you see as the main issues with the way the medical profession treats people with M.E?
JTB: I just feel there’s not enough understanding at all. I would love to say that’s just what happened in the past – like in 2006, when A Girl Behind Dark Glasses is set – but it hasn’t changed at all. I’ve had parents get in touch with me whose children are literally going through exactly the same things as I went through.
The problem is there’s no apology, no “I’m sorry, we didn’t get this”, no acknowledgement of the fact they got it so wrong. That then becomes a trust issue. Whenever I go into hospital and a doctor comes in, even now, I’m absolutely terrified. I’ve just lost trust in them over 14 years of not being believed or understood. My concern is, even though I feel like opinions are changing and there is progress, you’ve still got to deal with the trauma many patients have been through for the past however many years.
It’s one thing for the NICE guidelines to have got rid of treatments like CBT and graded exercise therapy (GET), but I don’t feel that’s going to end this. We need to deal with the fact a lot of people are terrified, they’ve been gaslit, they’ve never been believed. So often [with doctors] there’s almost an arrogance; they’re the doctor, you’re the patient, so they’re right and you’re wrong. Many times I didn’t even challenge this. Both my parents are medical, so I grew up believing the doctor knows best, you go to hospital, you get better, and that’s that. But in my case, even when I came home from hospital, I wasn’t better – and I faced years of doctors not understanding or even knowing about my condition.
Having said that, I have also had some incredible doctors too, who’ve given me back some trust. My GP would come to the house and speak to me, and she really wanted to learn and understand. That kind of willingness to listen and learn from their patients completely changes everything.
Do you feel like being a young woman affected the treatment you received?
Absolutely. When I was teenager and getting ill, they wouldn’t even talk to me. Everything was addressed to my parents. At 15, even though I couldn’t communicate, I could still understand what was going on but I was never allowed to know.
I was also sexually and mentally abused by a carer in hospital, and again I think the fact I was a child, and a girl, meant that when I spoke out it was easy to dismiss it. They never spoke to me about what happened, they would never give me counselling, and no other male members of staff were allowed near me after that. I guess they thought I’d say it about every man who was there. The people who were in charge were all men, and as a young woman I was never heard or understood – they just wanted me out of the way.
The same was true when it came to my actual ill health. It honestly felt a lot of the time like they thought I was just coming up with these symptoms. No one would take me seriously until it became an emergency, and then I’d end up being rushed into hospital. Constantly being dismissed like that really affects your way of thinking, because you think: ‘What’s the point? I’m not going to be believed.’ That made me downplay my own symptoms on occasions when it was actually quite serious, because I didn’t want to be seen as causing a hassle.
You talk in the first book about having to prove your M.E symptoms weren’t “just depression” – did that make it harder to deal with the mental health toll of everything you’ve been through?
I feel that’s like a massive issue for M.E patients. I’ve witnessed doctors shouting at patients, telling them they have an eating disorder or depression, not M.E. Can I not have M.E and also feel sad about what has happened to me? My physical symptoms and the mental health impact of living like this are two different aspects of the condition.
For the first 12 years of my illness, I just wanted to live my best life, even if I couldn’t do anything. I really pushed myself to sit up in a chair, and then to stand up, but that was out of desperation really. Those things were all to help me, to give me a focus and plan out all these little goals. My mantra for a really long time was just to keep fighting through, but that’s not sustainable and I wasn’t actually dealing with anything. It was just exhausting.
As I was writing the first book, I remember thinking, ‘How have I never dealt with it? I’m not okay.’ For such a long time I had to be okay, because being okay was the only option, but I’ve now spent the last few years trying to come to terms with everything. Writing this second book was a huge challenge in the sense of reliving everything that happened, because it was so traumatic, but I needed to do it.
How important have online communities and activism been to this part of your story?
Activism gave me a purpose, and made me feel like I was fighting for something more than myself. The M.E community understands me more than my friends sometimes, because they’ve been through the same things and know exactly how it feels. That was a big part of why I wrote the book, to give a voice to this kind of suffering. It’s just one story, but it’s one of millions, and it’s really important for people outside of the community to know that people are living these lives. Our stories are all different, but I really wanted to do the community justice and hopefully inspire other people to tell their own stories.
I also wanted to give hope – to show what’s happened, and what I’ve done, since I got out of hospital. I always think back to the 14-year-old me who got ill. If I could have said to her, “look, all of this happens”, that would have made it so much easier. We are more than our illnesses, so it was important to be able to say, as much as I suffer, I’m still doing all these different things.
Have you got any plans for a third book?
I do! A Girl Behind Dark Glasses is really focused on institutionalisation and it’s the beginning of my journey. It only covers four years, whereas A Girl In One Room is a much bigger middle part of the story, covering seven years after I came home from hospital, up to getting married, so it has a much more positive ending. But I would really like to write a third part that focuses on my new chapter and new identity as a chronically ill mum.
I feel a lot of responsibility though, and I’m very mindful of not triggering anyone, because a lot of people in the M.E community don’t feel they can ever have a child. That’s a really tough experience. But I also feel like, within the broader chronic illness community, there are a lot of chronically ill mums and we’re never really seen. When I found out I was pregnant I felt complete terror – I couldn’t see myself represented, and didn’t know how I would be able to get through it. I’ve never felt so isolated in my entire life.
A Girl In One Room is published on 25 February but you can pre-order it now, as well as ordering her first book, A Girl Behind Dark Glasses, from Bookshop.org – the online retailer that supports independent local bookshops:
All bookshop.org links included in this post are affiliate links, so Hysterical Women will receive a small amount of commission from each sale. As a not for profit blog, this commission goes towards commissioning paid guest posts by writers from marginalised and under-represented backgrounds.
You can also find all the previous Hysterical Women Book Club picks at: uk.Bookshop.org/shop/HystericalWomen.