Are you disabled, and do you want to contribute a review or article? Stephanie Burgis was born in Michigan, but now lives in Wales with her husband, writer Patrick Samphire, and their children. Having an illness equals – in many people’s minds – being “weak”. Thank you for posting this. So, I get it. “Mainly, the key is just to work and work and work at getting better at your writing, by getting as much feedback as possible and by critiquing other people’s work as well…and then keep trying. Procrastination just isn’t an option, nor is “waiting for inspiration to strike”. She asked me if I could talk a little bit to her about how I managed it, and she said it was okay for me to post my answer online. There are quite a few authors with CFS/ME, the most famous example being Laura Hillenbrand, who is quite severely ill. But then there are the evil modern ones, those dastardly benefit-scroungers who are “obviously” making up their medical conditions in order to steal money from the public (at least according to right-wing UK papers and politicians). She’s had it for years. There will be people who snort with disbelief at the first mention of it and dismiss you as a fraud or a hypochondriac. Change ), You are commenting using your Google account. I have CFS/ME (as well as a life-threatening complication caused by it) and make my living writing both fiction and medical non-fiction about my illness and chronic illnesses in general. Not enough to kill him but enough to really slow him down. The column referred to the syndrome as “yuppie flu”, and oh, it was hilarious. I’m close to other writers with chronic illnesses (including M.E.) But without meds my cognitive problems would be too severe to write, at least anything of publishable quality. What will people think? Patreon | Twitter | Instagram | Goodreads. Reading Stephanie Burgis’s Congress of Secrets is like eating a piece of rich, decadent chocolate. Now I’m both American and British, which feels pretty magical to me. Of course there were the old 19th-century, saintly invalids who died well, without complaint, like Beth in Little Women. You are SO incredibly kick-ass. And never give up. Stephanie Burgis was born in Michigan, but now lives in Wales with her husband, writer Patrick Samphire, and their children. It seems to me like most of us write scifi/fantasy or something otherwise very escapistic (like Hillenbrand), though of course healthy people also write a lot of genre literature. In fact, as someone with ME/CFS, in many ways I feel very lucky to be a writer, because it’s a career that I can pursue even though I’m too sick to go into an office to work. Nowadays, I mostly write fun MG fantasy adventure novels and frothy, romantic historical fantasies for adults – and I’m having so much fun with all of them! I was born American and still am, but I spent seven years living in Yorkshire, England (where A Most Improper Magick/Kat, Incorrigible is set) and now I live in Wales and have dual US/UK citizenship. I don’t get any support from the people closest to me, so the only coping mechanisms I have are writing and denial. I like your phrasing “utterly ruthless in how I set out my priorities.” Sometimes I think of it as spoon triage! Before I became a full-time writer, I won a Fulbright Scholarship to study in Vienna, Austria, earned a Master’s degree in music history, and spent three years as a doctoral student researching late-eighteenth-century opera and politics in Vienna and Eszterháza – research which directly inspired my (wildly romantic and operatic) adult historical fantasy novel, Masks and Shadows! I remember the first time I ever heard of Chronic Fatigue Syndrome. Kat, Incorrigible (US)/A Most Improper Magick (UK) won the Waverton Good Read Children’s Award in 2011 for Best Début Children’s Novel by a British writer. – Kirkus Reviews. They will n… I’ve talked elsewhere about what it’s really like to have M.E. They’ll see me sitting in a café or chatting with other parents at my son’s school, and there is nothing in my appearance to indicate that I have a chronic illness. Just contact me to set it up! Find her on Twitter and Pinterest. I don’t want to be defined my depression, but by my writing. As a performer and a massage therapist, I frequently have occasion to discuss depression (which I have) with others, and I’ve found numerous people who are simply shocked that a) I, being a “cheerful” type, could possibly have depression (you don’t *seem* sad! I come from a big, noisy, loving family, and I’m really close to my younger brothers, so it’s not a surprise that so many of my books are about families of one sort or another. But these illnesses are just that: illnesses. (“Wait, should I mention that? Having an illness that is still sometimes referred to as “yuppie flu”, something imagined to be purely in the heads of its victims (even though medical science disproved this theory years ago) – well, what does that say about you? About ten years later, I was diagnosed with M.E./CFS. Thanks for writing this, Stephanie. I have CFIDS too, and I’m a writer too, though I’m a critical writer (children’s book reviewer). As you say, we have to set priorities. *HUGS*”, Every time I’ve started to mention something about my illness since reading her email – on my blog, on Twitter or on Facebook – I’ve still felt that automatic, instinctive wince that always comes up for me. If you’d like to join my dragons-and-books circle for regular book joy and ebooks, check out my Patreon page. I don’t blame anyone for keeping their illness private and off the screen, especially when they’re trying to promote their books or other work. You can read the first three chapters of each of her books on her website. Before becoming a fulltime writer, she studied music history as a Fulbright Scholar in Vienna, Austria and worked as a website editor for a British opera company. The lovely Stephanie Burgis talks about living with, and writing with, ME / CFS on the “Disability in Kidlit” blog today. is an “invisible illness”, one that isn’t obvious at first sight. I grew up in East Lansing, Michigan, hopelessly addicted to books – and luckily, my family visited the library every week. Fill in your details below or click an icon to log in: You are commenting using your WordPress.com account. I was at BristolCon last year when you had your book launch. I was a teenager when I saw it being mocked in a snarky Sunday column in the New York Times. ( Log Out /  “Fatigue” is really not the word for it! Your are using a very old web browser that is now coming to the end of its useful life. Who wants to appear weak, especially when you’re trying to make friends or promote your writing online? That young lady can see further into her future because of your candor. Thanks so much, Jo! I would never be able to write books if it wasn’t for nootropics (cognition enhancing drugs). Last month, I got an email from a fantastic, bright, ambitious teenage girl who wants to be a writer. It was very inspiring to me, as I look to re-invent myself and find a way to live with ME and earn a living. Before becoming a fulltime writer, she studied music history as a Fulbright Scholar in Vienna, Austria and worked as a website editor for a British opera company. The more of us who speak up about “invisible” illnesses, the less weird and foreign and scary and/or suspicious they will be. who have chosen, after careful thought, to never, ever refer to their illnesses online. I can’t even count the number of novels I’ve read where the detective heroes or heroines inevitably expose all those terrible fakers, all pretending to be ill just to get workman’s comp or other benefits. It was followed by Renegade Magic/A Tangle of Magicks and Stolen Magic/A Reckless Magick. The main characters in my first two novels (which together with a third novel whose main character has EDS form a loose “cripfic trilogy”) also have CFS/ME. Stephanie Burgis grew up in East Lansing, Michigan, but now lives in Wales with her husband and two sons, surrounded by mountains, castles and coffee shops. It means that I don’t do a ton of other things that most people think of as necessary, and I also don’t do several things that would just be fun. And having a chronic illness in general – well, what cultural associations do we have with invalids, nowadays? Reblogged this on Joanne Hall and commented: Designed and built by 50 Seconds North. Stephanie Burgis: Living With—and Talking About—M.E./CFS, Disability and Diversity in Young Adult Fiction, Alex Townsend reviews ALL THE BRIGHT PLACES. And she was so shocked – and so deeply, deeply relieved – to find out that there was a real, professional writer out there who was making a career in the publishing world despite M.E. WordPress is not posting Stephanie’s comments for some reason, so I’m posting on her behalf. And don’t we all want to appear strong and valuable? “Basically, it comes down – like so many things with ME/CFS – to ruthless prioritization, something I’m sure you’ve already become expert at in the last three years. Who wants to be associated with any of those images? 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