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How an Invisible Illness Helped Me Write My First Novel

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When I was in my early 20s I stopped being able to eat. Not stopped wanting to eat or stopped making myself eat; I stopped being able to swallow food and keep it down. Eating food of any substance created a hard ball feeling in my chest, getting increasingly uncomfortable until eventually I’d run to the nearest toilet to regurgitate. For many people around me, it seemed clear I had bulimia – but the truth was I desperately wanted to eat, looking longingly at meals with the wide eyes of a child looking at a sweet shop display.

I went to my student health clinic and the doctor quickly came to the same conclusion as my friends – I was a young woman who was rapidly losing weight, I must have an eating disorder. I denied this vehemently – I loved food! And so she came to another snap judgement, I was a young student rapidly losing weight, I must be “stressed.” Although stress can be extremely detrimental to health, I felt that this was her coded way of telling me the condition was something I could personally fix. If I listened to some relaxation tapes and organized myself a bit better I might suddenly find I could eat again. This seemed a bit like telling someone caught in a flood that, if they just rearranged the furniture, the water levels will drop.

I could control my condition as much as I could control adverse weather. It was only when I dropped an even more significant amount of weight and my symptoms became more severe (I was fainting regularly, had chronic insomnia, constantly shivering and in pain because there was no body fat to cushion my bones while lying or sitting down) that I was finally taken seriously and sent for a hospital X-ray – conducted whilst swallowing. Almost instantly the doctor in charge confirmed what I knew all along, it wasn’t bulimia or stress that was causing me to regurgitate – the muscle above my stomach was not opening when I ate. The ball I felt inside my chest was food piling up in my oesophagus and, because the food couldn’t go down, it was forced to come back up.

This condition was called “achalasia” and is usually seen in elderly patients, which may have been why it wasn’t picked up in me, a person in their early 20s, that quickly. As anyone who has an undiagnosed condition knows, finally having a name for the thing that is happening to you and causing you so much distress is one of the most amazing feelings you will ever experience. It doesn’t stop the physical symptoms, it was surgery and a rapid weight gaining program that did that, but a diagnosis does stop the cynicism from others and builds confidence in yourself. One person had accused me of making the whole thing up – I was writer after all, so fiction came easy to me apparently – but being able to tell that person my condition, and that I needed urgent hospital care for it, quickly quietened her dismissive comments.

Writing has been a therapeutic act for me since I was a child and has helped me through a lot of traumatic events. But the condition had left me with no energy – physically and mentally – making it hard for me to follow a simple conversation, let alone the plot of a whole novel. But after having key-hole surgery on my oesophagus I started to get better and, with that, I started to write again. I described in my diary at the time about the delight of being able to write stories again, of being able to create again, after months of months of having nothing but food and sleep on my mind. There’s much talk about the health risks of being overweight but very few people talk about the health risks of being underweight. When I started to get back to a healthy weight again I began to appreciate the importance of food and, indeed, fat, as well as the general wonder of a healthy, functioning body that is so often taken for granted.

I’d written the first draft of my first novel “The Things We Thought We Knew” when I was 16, way before my invisible illness began to develop. In that first draft my central character, Ravine, was a in a coma – making the character as passive as you could possibly make a character. I abandoned the story knowing that this major flaw needed to be dealt with if I ever wanted the novel to work. It was years later, when I was watching a documentary about pain that I realized what Ravine’s condition was. She, like some of the people featured, had chronic pain. The knowledge came to me as if it was something I should have already known. It wasn’t a case that I chose the condition for my character, the condition was already a part of her.

Yet still, I had to do my research. I scoured websites and medical textbooks, I spoke to people I knew who lived with chronic illnesses and viewed that documentary over and over again. When I began to re-write the novel I used everything I’d discovered but I also began to draw on my own experiences of having an invisible illness. Of being isolated in the bedroom of my mother’s council estate house, of the constant disturbance in my sleep and movements and the incredulity from others of my condition. I didn’t realize it at the time, but when I was writing about Ravine having chronic pain I was also writing about myself having achalasia.

The novel was published last year and I began to get enthusiastic reviews from bloggers. A surprising amount of the bloggers lived with debilitating conditions themselves, and I realized I was also writing about other people who have experienced chronic pain and invisible illnesses. One reader said the novel helped her understand the condition her best friend had struggled with for years. Another reviewer, living with chronic pain after a spinal injury, said the book came to her just at the right time, both breaking and mending her heart.

There were things I didn’t get right, with one aspect of Ravine’s condition in particular I would deal with completely differently if I could. But even in the criticism there was an appreciation for the fact that invisible illnesses had been dealt with as a subject matter in a mainstream book. As an Asian woman from an underprivileged background I knew representation mattered already, but I had unwittingly represented a group I hadn’t realized was so much in need of representation. One of the most destructive feelings we can ever have is to feel we are the only one. I’d felt like that when I was struggling with my condition and I know others have felt like that too. But we are not the only ones.

Websites like The Mighty, as well as the many bloggers and vloggers out there demonstrate that there are whole communities feeling the way we have and dealing with the same pain we feel or have felt. I think the phrase “everything happens to you for a reason” is as helpful to someone going through a crisis as the advice given to the person dealing with a flood. But I hope that in writing this novel I have shown that everything that happens to you is part of your story, and that by joining a community and sharing your story we can diminish that feeling of being alone and, instead, start to feel united.

Getty Image by Wavebreakmedia

Originally published: June 11, 2018
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