Category: Illness / Disability

Ever since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.

But, when I was a teenager, I became really ill.

The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.

These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).

But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.

Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.

This is where my writing really came in.

Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!

But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.

Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.

I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.

I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.

But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.

Aged nineteen, I signed my first book deal.

A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.

By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.

But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.

Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).

This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.

And I have to keep writing.

About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.

For more information, please check out her website. Follow Madeline on Twitter, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.

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