Living With—and Talking About—M.E./CFS

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I remember the first time I ever heard of Chronic Fatigue Syndrome. I was a teenager when I saw it being mocked in a snarky Sunday column in the New York Times. The column referred to the syndrome as “yuppie flu,” and oh, it was hilarious. Those silly rich people imagining themselves sick!

It was a very funny column. I laughed. I even read particularly scathing, sarcastic bits out loud to my parents.

And then I got it.

About ten years later, I was diagnosed with M.E./CFS. (CFS is still the medical name in the United States; in the UK, where I live now, it’s referred to as Myalgic Encephalomyalitis, or M.E., which is a lot more accurate as a label. “Fatigue” is really not the word for it! The name “Chronic Fatigue Syndrome” just asks to be laughed at—because after all, haven’t we all been tired from time to time? Well, no. Not like this, you haven’t. Trust me.)

I’ve talked elsewhere about what it’s really like to have M.E. Today, though, I wanted to talk about why I talk about it.

The thing is, M.E. is an “invisible illness,” one that isn’t obvious at first sight. Most people I meet don’t know I have it. 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. They don’t know that I have to spend hours afterward resting after any trip, even just to my local coffee shop. 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.

So mostly, when people see me, it’s automatic for them to assume that I’m healthy—or, rather, “normal.”

And when it comes to an online presence … well, who could possibly guess, if I didn’t talk about it? That’s what makes it really hard.

I’m close to other writers with chronic illnesses (including M.E.) who have chosen, after careful thought, to never, ever refer to their illnesses online. They’ve made that decision for really smart and valid reasons.

Having an illness equals—in many people’s minds—being “weak.” Who wants to appear weak, especially when you’re trying to make friends or promote your writing online?

Being independent in the world—that equals strength and value in our society. And don’t we all want to appear strong and valuable?

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? There will be people who snort with disbelief at the first mention of it and dismiss you as a fraud or a hypochondriac.

And having a chronic illness in general—well, what cultural associations do we have with invalids, nowadays? Of course there were the old 19th-century, saintly invalids who died well, without complaint, like Beth in Little Women. 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). 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.

Who wants to be associated with any of those images?

So, I get it. I really do. 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.

But … but, but, but …

Last month, I got an email from a fantastic, bright, ambitious teenage girl who wants to be a writer. She wasn’t writing just to tell me that, though. She was writing in shock, having just found out, long after reading my first two novels, that I have M.E.

Because here’s the thing: she has debilitating M.E., too. She’s had it for years. 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. That meant there were real possibilities, and a future for her, even if she couldn’t get a day job out of the house. 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 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. So, here’s part of the email I wrote her:

I am sorry to hear that you’re also dealing with ME/CFS. But yes—it really is possible to deal with the illness and have a writing career (although of course it isn’t easy). 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. (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.)

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. Because I only have a limited amount of energy, I have to be utterly ruthless in how I set out my priorities, and I can’t let myself get side-tracked. Now that I’m a mom, the care of my son is my highest priority (which doesn’t mean I’m looking after him all the time—my husband and I are equal co-parents, trading childcare on and off throughout the day, and also our son goes to preschool nowadays—but his care is the top priority that needs to be addressed by SOMEONE before I can move on to my next priority). Then comes my writing. Then and *only* then, if I have any energy left in the day, I can move on to the next priority on my list. But I might have used up all my energy by then.

It means that our house is almost always a mess, because I can’t waste my energy on housecleaning when I need it for getting my writing done (or looking after my son). 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. But I HAVE to get the writing done, and I have so little time and energy that I can’t afford to waste any of 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. And never give up. And never let anyone else sidetrack you from what your own most important priorities really are. *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. (“Wait, should I mention that? What will people think? 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. who were managing to follow fulfilling lives and careers anyway. And I’ve thought about how knocked off my feet I was—so shocked and almost tearfully relieved—when one of my lifelong-favorite writers posted publicly about her own M.E. 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. Finding that out made me think: “I’m not alone. I really can do this.”

We all need to hear that, in life.

And so I keep on writing about it.



About Author

Stephanie Burgis

Stephanie Burgis was born in Michigan, but now lives in Wales with her husband, writer Patrick Samphire, and their children. 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. She has published over thirty short stories for adults. 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. It was followed by Renegade Magic/A Tangle of Magicks and Stolen Magic/A Reckless Magick. Find her on Pinterest.

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17 Comments

  1. 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). I like your phrasing “utterly ruthless in how I set out my priorities.” Sometimes I think of it as spoon triage!

  2. 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. 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. I would never be able to write books if it wasn’t for nootropics (cognition enhancing drugs). Before those I could hardly even read books – on my good days it would be magazines, on worse days I’d page through ad catalogs.

    It helps I’ve never had a problem with motivation. As you say, we have to set priorities. If I’m well enough to write, I write. Procrastination just isn’t an option, nor is “waiting for inspiration to strike”. But without meds my cognitive problems would be too severe to write, at least anything of publishable quality.

    There are quite a few authors with CFS/ME, the most famous example being Laura Hillenbrand, who is quite severely ill. 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. I don’t get any support from the people closest to me, so the only coping mechanisms I have are writing and denial. 😛 Writing is what keeps me sane.

    • WordPress is not posting Stephanie’s comments for some reason, so I’m posting on her behalf. Here’s her response:

      I think writing is truly life-saving for a lot of us. Thank you so much for sharing your story!

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  4. You are awesome. Thank you for posting this. 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. I don’t want to be defined my depression, but by my writing.

  5. I think it is great to openly talk about this illness. I have it and if I did not mention it and talk about it people would just assume I’m lazy. I went from marathon running and middle management to ‘glad to make it out of bed’!
    I was at BristolCon last year when you had your book launch. 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’m hoping writing may help, as an outlet and a wage.
    My favourite way to describe the illness is this: imagine Superman had a slither of kryptonite stuck on his suit. Not enough to kill him but enough to really slow him down. That’s how I explained it to my boys!

    • I love that description of M.E.! I’m going to remember it for when my own boys are older. Thank you so much for coming to my launch, and for that wonderful feedback. I’m wishing you all the very best in your own reinvention.

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  7. As usual, you move me with your sensitivity, thoughtfulness, and grace. 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!), and b) I talk about it so matter-of-factly. But these illnesses are just that: illnesses. If you have the flu, you don’t hedge about it. If you have diabetes, you just … have it. You don’t have to advertise, but you don’t hide it. It’s just another thing that’s a part of your life; sometimes it’s major, sometimes minor. The more of us who speak up about “invisible” illnesses, the less weird and foreign and scary and/or suspicious they will be.
    That young lady can see further into her future because of your candor.

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