Ehlers-Danlos Syndrome, Writing & Me

In 2012, after several years of ill health, I was diagnosed with EDS Type 3 (hypermobile type). In simple terms, EDS is a connective tissue disorder that affects the way the body produces collagen (that’s the protein that gives strength to our joints, muscles and skin). My body doesn’t produce collagen the way it should, so I’m too stretchy. In turn, that means that more stress is put on my muscles to try to provide some stability and rigidity to my body.

 It can be a tough thing to deal with. I’ve heard many EDSers describe it as feeling like they are running a marathon every day. That’s a pretty accurate analogy. Other than the pain, fatigue and “brain fog” are our biggest enemies.

You may wonder why I’m sharing  all this with you. After all, this is a blog about books and writing, not health conditions.  I’m telling you because finding out I had EDS was a large factor in why I started writing. 

For seven years I worked as a Library and Information Officer for my local council. As you can imagine, that was the perfect job for a life-long book lover. Sadly, because of my misbehaving health, I lost my job in 2010, and my mother very suddenly passed away at the same time. That was probably the most difficult time I’ve experienced in my life so far.

But this isn’t a sob story. 

One night a few months after I’d lost my job, I had a dream (I know, what a cliché!). It was awesome! It was so good that I woke myself up to write it down so I wouldn’t forget it. The next day I started fleshing out the characters that I’d met in my dream. Even in the dream they had personalities that were very much their own. All I had to do was listen very carefully to what they were whispering to me. Then I started writing out profiles for them, and family trees, and histories and quirks. Very quickly I was hooked. I’d always written, poems and songs mostly. Never stories. I always believed that I had no imagination. And yet here I was, suddenly with a book full of scribbled notes and my head filling with ideas faster than I could get them on paper. 

Even then, I didn’t know I was writing a book. I was simply trying to keep myself occupied while I was unwell, unemployed and grieving. Writing and researching became my lifelines. I would go to bed dreaming — about my characters, or apostrophe’s, or the difference between  em-dashes and en-dashes — and I would get up in the morning with my son and spend all day learning and researching and writing while he was at school. He’d always know if I’d spent the day immersed in my work because he’d come home from school to find me with a slightly glazed, faraway look in my eyes.

It wasn’t until I’d written 30,000 words that I finally admitted and acknowledged that, maybe, just maybe, I was writing a book. It was hard work; I had so much to learn, not just about the story, but about writing. And I loved it! Every bit of it. Two years and 80,000 words later I had a completed story. I’m not published as yet. I haven’t quite worked out what avenue to pursue to get my writing out there. I’m thinking maybe I’ll share it on here.

My writing story may have started out because of circumstances less than ideal, but through it, I have found something I can do, even with EDS, something that stimulates and challenges me. I found my passion. Yes, some days are a struggle, but what writing gives me is so much more that what it costs me. Through it, I’ve met (in the cyber sense) some wonderful people — readers and writers — that inspire and motivate me to keep reading and writing.

Perhaps if I’d never gotten ill and lost my job, I’d never have started writing, never have found my passion for creating. For that I’m eternally grateful. There will never be a time when I stop writing. It’s part of me now. 

So if a few days sometimes go by when I don’t post, please be patient with me. Know that, while I’m impersonating Mr Fantastic, I’m stroking my chin and planning, scheming and machinating. In the writing sense, of course. And, hopefully soon, I’ll have the first excerpt of the new book I’m writing for you to read.

Happy writing, peeps!






  1. Thank you for sharing, Emma 🙂 Yeah, I guess things happen for a reason, but I don’t doubt that if you hadn’t been through those experiences,you would have still been drawn to writing. But what is true though, is that everything you’ve been through will affect every word you write. I cant imagine writing without having had children, or my husband driving me crazy at times, or us struggling for money.
    I know that faraway look. It would be wonderful to share your work on here. Don’t ever worry about being absent ( although I did miss you on goodreads!). I shall always be popping in regardless. There’s something really special about you 🙂


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