I couldn’t find people suffering from chronic illness in books – so I wrote my own

Even as a child, I always knew I was ill – having a chronic illness permeates every moment of your life. But as a child, it wasn’t something I worried about. I was the first baby in the world to be diagnosed with cystic fibrosis by the heel-prick test, which meant I received incredible care from the moment I was diagnosed.

But when I was 10, I found myself sitting on a bed in a children’s ward for the first time. I remember them bringing in the lunch trolley and presenting me with a steaming plate of chicken pie and broccoli. It looked and smelt so good, and I sat patiently, cross-legged on the bed, waiting for the doctor to finish speaking so that I could begin eating. But then he told me what they needed to do to make me better, and for the first and only time in my life my appetite disappeared.

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I was to start a two-week course of intravenous antibiotics. My bed was next to a girl with epilepsy. The first time I saw her have a fit was frightening; the second time was fascinating. In my time in hospital, I met teens with broken legs, babies in hip casts, children with cancer and everything in between.

After a few days, I was allowed to go home, and my mum took over the role of administering my drugs. Some of them were so strong they stung as they went in, and Mum lovingly placed warm flannels over my skin to try to stop the pain.

I remember one summer, desperate to continue with normal life, I waded across the river with my friends, my heavily splinted, bandaged hand raised high above the water level.

At 16, I moved to a different hospital. It had a whole wing just for CF patients – something that never happens now, as it has since been discovered that people with CF could infect each other with potentially deadly strains of bacteria. These people were all young, which was fun at the time, but looking back, the reality of it sinks in – they were young because people with CF do not live for long.

Many were sicker than me: I could see my future in their faces, hear it in their breath. I knew by then that people died from CF. Already my armour was forming. I kept to my room and read.

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I was constantly given reminders of how different I was. I remember once, I had an RE lesson at school where we watched an ethical dilemma. As the film started, I heard a familiar sounding cough on screen, and instantly, I knew: this video was about someone like me.

The film debated whether babies with chronic illnesses such as cystic fibrosis should be aborted. I spent the whole lesson head down, flaming cheeks hidden behind my hair – the students didn’t know I had CF. Afterwards, the teacher came up to me in front of everyone and said, “I hope you didn’t mind me showing that, Polly.”

I turned to books to try to find answers. But no novels I read seemed to feature people like me. Or at least, if they did, the hero always died in the end. And so, I began to write.

Writing for me was something I could do when I was too ill to go to school or work. It was a way of making my life about something other than an illness that can sometimes feel like it owns you. I always steered clear of writing about CF, but after Covid, when I was shut away for months, classed as extremely clinically vulnerable, I began to pick apart my complex relationship with my illness.

In my latest book, The Vulpine, a dystopian thriller for teens, the heroine lives in a world where disability and chronic illness have been outlawed. When she discovers her own condition, she must go on the run or risk being imprisoned. I didn’t want the story to be about her being sick – I wanted her to have adventures, a meaningful life, just as I do. I was writing for teenage me and for others like me who happen to have disabilities but continue to thrive in spite of them. And I was writing for everyone else too – to show them that disability does not label us.

I don’t believe that CF defines me, but without it I don’t think I would have succeeded as an author. It gave me the determination and resilience to keep trying, and without the enforced rest and recuperation that this disease necessitated, my brain would not have been able to think up stories.

I often think back to that little girl who sat cross-legged on the hospital bed, her appetite gone. If only she could see what incredible advances medicine will make in her lifetime, and what an exciting life she has ahead of her. I am thankful that my appetite – not just for food, but for life itself – has since then always been ravenous.

The Vulpineby Polly Crosby is out on 16 January (Scholastic, £8.99). You can buy it from the Big Issue shop on bookshop.org, which helps to support Big Issue and independent bookshops.

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