Not like this, you haven’t. I don’t get any support from the people closest to me, so the only coping mechanisms I have are writing and denial. She attended the Clarion West science ficti 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. Last month, I got an email from a fantastic, bright, ambitious teenage girl who wants to be a writer. ( Log Out /  I went from marathon running and middle management to ‘glad to make it out of bed’! (Really, any freelance career is a gift to people like us – I know other people with ME/CFS who support themselves with web design, book cover design, etc – anything that can be done from home, so that you can lie down on a couch to do it, and you can work to a flexible schedule.). The column referred to the syndrome as “yuppie flu”, and oh, it was hilarious. There are quite a few authors with CFS/ME, the most famous example being Laura Hillenbrand, who is quite severely ill. Not enough to kill him but enough to really slow him down. Trust me.). About ten years later, I was diagnosed with M.E./CFS. Change ), You are commenting using your Twitter account. Stephanie Burgis: Living With—and Talking About—M.E./CFS, Disability and Diversity in Young Adult Fiction, Alex Townsend reviews ALL THE BRIGHT PLACES. Procrastination just isn’t an option, nor is “waiting for inspiration to strike”. But I might have used up all my energy by then. 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. 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. I would never be able to write books if it wasn’t for nootropics (cognition enhancing drugs). I have it and if I did not mention it and talk about it people would just assume I’m lazy. Of course I wasn’t glad that she had it – I was horrified for her sake – but oh, did it mean so much to me to find out that a writer I adored was incredibly successful despite sharing my condition. Oh, Stephanie. – Kirkus Reviews. Here’s her response: I think writing is truly life-saving for a lot of us. 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! Reblogged this on Joanne Hall and commented: Maybe I should leave that bit out…”), …But then I’ve thought of that girl, who was so glad to find out there were people with M.E. 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. It meant that even if she had to lie on the couch all day, she might still be able to follow her dream after all. She has published over thirty short stories for adults. Who wants to be associated with any of those images? I laughed. I grew up in East Lansing, Michigan, hopelessly addicted to books – and luckily, my family visited the library every week. “Fatigue” is really not the word for it! They’ve made that decision for really smart and valid reasons. My favourite way to describe the illness is this: imagine Superman had a slither of kryptonite stuck on his suit. I’m hoping writing may help, as an outlet and a wage. Today, though, I wanted to talk about why I talk about it. Those silly rich people imagining themselves sick! She’s had it for years. Are you disabled, and do you want to contribute a review or article? Just contact me to set it up! They don’t know that I spend most days at home without going out at all, saving up my miniscule stores of energy for the things I really want (or have) to do. If you’d like to join my dragons-and-books circle for regular book joy and ebooks, check out my Patreon page. It helps I’ve never had a problem with motivation. Find her on Twitter and Pinterest. I grew up in East Lansing, Michigan, hopelessly addicted to books – and luckily, my family visited the library every… ( Log Out /  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. Being independent in the world – that equals strength and value in our society. “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. There will be people who snort with disbelief at the first mention of it and dismiss you as a fraud or a hypochondriac. I don’t have ME, but I do have depression, which I guess can be regarded as another “invisible illness”, and I’ve always tried to be open about it online because I think (hope) it helps other people to know they’re not alone, and that you can do stuff even with a crippling black dog snuffling at your heels. 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. I really can do this.”, Stephanie Burgis has previously written about disability at her LiveJournal: “Giddy – and Some Long-Unspoken Truth” and “Hard Truths”. Thank you so much for coming to my launch, and for that wonderful feedback. 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. 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. Stephanie Burgis was born in Michigan, but now lives in Wales with her husband, fellow writer Patrick Samphire, and their children. So, here’s part of the email I wrote her: “I am sorry to hear that you’re also dealing with ME/CFS. Designed and built by 50 Seconds North. Most people I meet don’t know I have it. Reading Stephanie Burgis’s Congress of Secrets is like eating a piece of rich, decadent chocolate. 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? The more of us who speak up about “invisible” illnesses, the less weird and foreign and scary and/or suspicious they will be. 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. Writing is what keeps me sane. Change ), You are commenting using your Facebook account. I live with my husband, fellow writer Patrick Samphire, our two sons (known online as “Mr Darcy” and “Mr X”) and our extremely vocal tabby cat, Pebbles. Note for teachers, librarians and bookclubs: If your class or bookclub has read one of my books, I’m always happy to do a fifteen-minute Q&A Skype visit for free. As usual, you move me with your sensitivity, thoughtfulness, and grace. But without meds my cognitive problems would be too severe to write, at least anything of publishable quality. The thing is, M.E. That meant there were real possibilities, and a future for her, even if she couldn’t get a day job out of the house. They don’t know that I have to spend hours afterward resting after any trip, even just to my local coffee shop. 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). My dad read me both The Lord of the Rings and Pride and Prejudice when I was less than ten years old, so I learned very early in my life to love fantasy adventures AND 19th-century romantic comedies! So mostly, when people see me, it’s automatic for them to assume that I’m healthy – or, rather, “normal”. Who wants to appear weak, especially when you’re trying to make friends or promote your writing online? Stephanie Burgis grew up in America but now lives in Wales, surrounded by castles and coffeeshops, with her husband (fellow writer Patrick Samphire), their two young sons, and their extremely vocal tabby cat. 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