After Struggling With Chronic Pain & Fatigue For Years, I Finally Found Answers

After many, many frustrating doctor's appointments, I received a name for my symptoms: Ehlers-Danlos syndrome (EDS). The Ehlers-Danlos syndromes (there are thirteen subtypes) are a connective tissue disorder that causes joint instability (including dislocations and subluxation), joint and muscle pain, fatigue, and a myriad of other symptoms (there is connective tissue in all manner of parts of the human body). I have the hypermobile type, and as the name suggests, my symptoms are focused on joint instability and its consequences.

Having a name for my condition was a huge relief and it allowed me to connect with the community of other people with connective tissue disorders. 

What no one tells you before a diagnosis of a chronic illness is that you'll become, by necessity, an expert in it and its management. What followed were years of self-study, coupled with endless doctor's appointments to develop an effective medication regime and a pain management plan. I learned to live my new normal, which included canes and slings, reminders for medications, and countless tiny adjustments to enable me to lead a life most healthy people take for granted. I spent so much time preoccupied by managing medication side effects and trying to control my environment to prevent pain flare-ups. 

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Eight years later—after a summer which included writing my first novel, moving house, and holding my grandmother's hand as she slipped from this life—I was struck with exhaustion that refused to lift, no matter how much I rested. That exhaustion turned into Chronic Fatigue Syndrome (CFS)1, and I soon discovered the difference between managing pain and fatigue: I can push through the former, but not the latter. 

As a result, I had to strip back my life to its bare essentials and give up many of my hobbies. In the process, I forgot how to live beyond just surviving. In the silence of my flat, I withdrew into myself. 

There were two things that I refused to give up: my dogs and my writing. My dogs were the reason I got out of bed every morning, and they became the motivation for me to go through the battle of managing my conditions a second time. Later, they gave me a chance to reconnect with people through dog sports. They've saved my life, given it meaning, and their companionship is worth all the pain and exhaustion that walks in the rain and endless hours of training cause.

While the dogs helped me forge connections in a life that otherwise would have been silent, I found a way to explain my world through my writing. When I began developing a new story idea, which later became my debut novel Fallible Justice, I chose to give the main character my EDS. I felt that chronic illness representation in fiction was lacking, especially as the main thread of a story. I also wanted to show a character wielding powerful magic, and yet having to manage her symptoms like I do. No matter how much she is surrounded by magic, there is no miracle cure for a genetic condition like EDS.

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I have never been able to answer the question “What is it like to be sick?" particularly well. How can I explain the hundred tiny adjustments I make every day? Or the challenge of chores and hobbies? Or the isolation of having to cancel plans yet again because of a flare-up? It can be challenging to convey other aspects of my life, too: Choosing my clothes to protect my joints from cold; turning down foods I like because of nausea; or having to go to bed at 9pm because I need at least nine hours of sleep to function properly. 

Through my Wilde Investigations book series, I have found the voice to explain my world to others. To some readers, my books offer a glimpse into a life they're lucky enough to never have to experience first-hand. For others, it's finally seeing themselves as the central character in a world filled with magic and wonder. The greatest compliment readers can pay me is telling me that my books made them feel seen.

The nature of illnesses such as EDS or CFS is that they are invisible. When I work my dog in the obedience ring or give a talk, it would be impossible to tell from looking at me that I have a chronic condition. As strange as it may seem, that is how I prefer it. On a good day, when I have no need for a cane or a sling, no one needs to know that I’m sick. 

But that very invisibleness of many chronic illnesses means that having them represented in fiction is all the more important. It offers a glimpse under the mask we wear each day, shows the difference between appearance and reality, and, I hope, helps us be more compassionate in the way we treat others.

My novels have become an escape shuttle to worlds beyond pain and exhaustion, a tether to a different life, and a chance to break the silence of a chronic illness. Given the range and severity of symptoms with conditions such as EDS and CFS, every person's experiences will be different. I have built myself a new life from the building blocks I could not do without, adjusted my dreams and plans to accommodate my illness, and found a way to separate the pain from suffering. As mad as it may sound, I am also very aware of how lucky I have been. Both of my conditions could be far worse, and while they impact every aspect of my days, I can still lead a semblance of the life I want to live. And for that, I’m eternally grateful.

Laura’s latest book, Wildest Hunger, is out in November with Louise Waters Books.

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