Why I’m writing a novel with a chronically ill heroine

It’s no secret that for a long time I’ve lived with severe Myalgic Encephalomyelitis, or ME.*

I’ve also mentioned, here on my blog and in interviews elsewhere, that I started learning how to write novels in order to keep myself sane when I was bed-bound, paralysed, in terrible constant pain, grieving for my old life, anxious about my young family’s future, and appalled by the chaotic lack of reliable medical knowledge that sat like a satisfied toad at the core of everything.

What I haven’t talked about, anywhere, to anyone, for a long time, is why I’ve never created a character who has ME, when I have such deep firsthand experience of the illness.

Back when I first started producing words, several people told me I should write about ME. I didn’t want to write scientific articles about it. Others were already doing that far better than I could. I wanted to write novels. So they told me I should write a novel about a character with ME. But I didn’t want to do that either, because I knew I wasn’t up to the job.

So what’s changed?

Well, for a start I’ve lived 23 years of research. And then there are my 7 published books, and the growth I’ve enjoyed as a writer through them. So, personally, I reckon I’m better qualified to write a character with ME now than I was back then. Inside, I was ready. What I needed was a nudge from outside.

I got two.

The first has been constant over recent months, while I’ve been soaking up and participating in the wave of social media pressure that is people demanding more diversity in publishing. Invalidity is one of the things people want to see more of in books, but I haven’t yet seen anyone talking about chronic illness. Which isn’t surprising, because chronically ill people tend to be quiet. So I thought, y’know, hmm.

The second nudge came as today’s date approached. 12th May is ME Awareness Day, and my social media portals have been filling with information posts and posters.

I’ve found it all a bit overwhelming, to be honest. Not because of the information they contain but because they symbolise the tip of an iceberg-like group of quiet people, many of them youngsters, who live quiet lives of relentless suffering.

I want to write a character for them. For us. People of all ages who live with ME and other chronic illnesses. Not as a vehicle for awareness – although heaven knows we need greater public awareness as well as the sufficient funding for medical research that you’d expect from any civilised society – but simply so that chronically ill readers can find a character in a story who is just like them. Which is what this push for diversity in publishing is all about, isn’t it?

So I’ve started writing The Orphan Age, a YA epic fantasy novel about a 15-year-old girl called Molly, who has ME, and whose quiet life is brightened beyond measure by her magical ability to enter books and engage with the characters and their stories. She starts as an observer and becomes a heroine.

This year, I’ll finish her story. Two chapters in and already I love her. πŸ™‚

Updated July 2015: I got seriously ill over winter 2014. Too ill to write anything. I had to set this novel aside, but I’ve returned to it now and aim to finish it by the end of this year.

Updated mid-December 2015: It’s going great and I’m on track to finish this very soon. Three or four weeks max. This year I’ve rewritten it with adult characters instead of YA and retitled it Storywalker. Molly, now aged 30, is one of my favourite characters I’ve ever written.Β 

*Also known erroneously in some circles as Chronic Fatigue Syndrome, or CFS, which is a bogus label invented in 1988 by a small group of corrupt people in order to help American medical insurance companies do what they exist for, which is avoid paying money out to people who are entitled to it. See the paper Myalgic Encephalomyelitis is not fatigue, or ‘CFS’Β for a superbly argued explanation.

 

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26 Responses to Why I’m writing a novel with a chronically ill heroine

  1. Erin says:

    That’s an impressive project, and I totally get how you had to be ready both emotionally and skillwise to tackle the story. Best of luck with it!

  2. jessie says:

    I’ve been trying this for years but always end up tossing it. my hat is off to you, david!

  3. Jean says:

    Excellent. I’m looking forward to seeing more characters to who reflect life as we deal with it.

  4. Dee Carney says:

    I’m looking forward to reading this!

    • David Bridger says:

      Thank you, Dee! I look forward to hearing your thoughts on it.

    • Edwina says:

      Hi David, I have just come over from the party. It must be quite a difficult task writing about the character with chronic ME, but gratifying that you feel you are now ready to do so. πŸ™‚

  5. Steve Vera says:

    Great post, David! Thanks for sharing. You’re a warrior and what better way to share your 23 years of research than to introduce the world to Molly. Can’t wait to read it!

  6. Geoff says:

    Hi Dave. Just thought I’d say that twenty or so years ago I came down with a weird virus. Was off work for several weeks which I believe to have been post viral fatigue syndrome. It was really awful. I’ll email you a bit more about this when I have time.

    • David Bridger says:

      Hi Geoff. Yes, from what I’ve heard about PVFT it certainly sounds like that’s what you had. I’m glad you came through it okay.

  7. Margaret says:

    Wow, that’s something to tackle and I like the sound of the approach you’re taking. Chronic pain of any sort is poorly understood and less well addressed both in and outside of the medical community. You know where I am with that. Though not to your level, the impact is pervasive and yet so easily dismissed. Here’s to Molly and her ability to educate…I don’t have to say entertain because with your stories, that’s a guaranty :).

  8. Maggie says:

    Thank you for this post, David. It was what I was mulling about for my short story–whether to give my hero a chronic illness. And yes, those who suffer from chronic illness are very quiet about it, so much so that you have no idea until they tell you. I have two friends with MS, a grandmother with RA, an uncle with RA, and I inherited SS from them (it’s a Rheumatoid disease).

    I could go on and on about people with chronic illness whom I know of, but I won’t.

    I, too, wondered why I never saw people with chronic illness in novels. And if there was, the illness was the big issue, almost overshawding the character. I like how you are making it a part of her, instead of all of her.

    I’m fortunate that my illness doesn’t occur 24 hours a day, seven days a week. I go through “flares” after I was diagnosed two years ago. It really slowed down my writing while I fought the disease. I was also worried it might cost me a writing career.

    SS attacks the moisture producing glands (it’s an auto-immune disease), digestive system, nervous system, skeletal system, muscles, etc. But I have a great sense of humour about it. However, when it first happened, I thought for sure my life was kaput.

    All the best on you novel, David. I’ll be sure to read once it comes out.

    • David Bridger says:

      Thank you, Maggie!

      I’m glad your life and writing career weren’t kaput despite the illness, and that you’ve kept your sense of humour.

      I hope today is a good day for you.

  9. Stacey says:

    Hi – I’ve just stopped by from Teachaholic’s blog party. I think that sounds like a really interesting premise for a story and I’d definitely be interested to read it.

    It’s nice to have a different kind of heroine occasionally, especially if it’s something that’s important to you. And I’m sure it will be helpful for other young people who suffer from similar conditions.

  10. Joy Morales says:

    This is awesome David. I think there are audiences out there for all different kinds of heroines, and definitely one for this one. Have fun with your novel πŸ™‚ Visiting from Teachaholic’s blog party πŸ™‚

  11. Oana says:

    I love the fact that you took something potentially debilitating and build your life on top of it. Your strength is tenfold because you had ME and that helped you discover you could write. It’s a happy ending.
    I’d love to read this project of yours. I’m sure it’s impressive!

    • David Bridger says:

      Thank you, Oana!

      I’ve set several other projects aside now to focus on finishing The Orphan Age. If my health holds, I’ll do it by the end of this year.

      (Btw, if you’d like to see behind the scenes while I write it, you’re very welcome to join my private newsletter. That’s what it’s for.)

  12. Ciara says:

    Hi David. A fantastic post and one I completely agree with. I’m currently trying to do a similar thing, write my protagonist as one with a chronic illness as I myself suffer from chronic and sometimes debilitating pain that is still cause unknown after two years of tests and various drug regimens. It was present for almost a decade before it was officially recognised as an issue a couple of years ago. I’m an aspiring fantasy author and this post as well as others on the topic made me realise that this is an area that is almost begging to be explored. So, hats off to you and one day I hope to do the same.

    • David Bridger says:

      Thank you, Ciara! I believe you’re right, that it’s definitely an area begging to be explored more.

      My novel Storywalker was published last summer and has enjoyed a good response with some heartwarming reviews, including ones from fellow spoonies. I hope you will enjoy the same rush of wellbeing that I got from writing mine, and the same lovely reception for your books.

      And I hope you’re having a good day today. πŸ™‚

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