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 \u201cyuppie flu,\u201d and oh, it was hilarious. Those silly rich people imagining themselves sick!<\/p>\n
It was a very funny column. I laughed. I even read particularly scathing, sarcastic bits out loud to my parents.<\/p>\n
And then I got it.<\/p>\n
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\u2019s referred to as Myalgic Encephalomyalitis, or M.E., which is a lot more accurate as a label. \u201cFatigue\u201d is really not the word for it! The name \u201cChronic Fatigue Syndrome\u201d just asks to be laughed at \u2014 because after all, haven\u2019t we all <\/em>been tired from time to time? Well, no. Not like this, you haven\u2019t. Trust me.)<\/p>\n I\u2019ve talked elsewhere about what it\u2019s really like to have M.E. Today, though, I wanted to talk about why <\/em>I talk about it.<\/p>\n The thing is, M.E. is an \u201cinvisible illness,\u201d one that isn\u2019t obvious at first sight. Most people I meet don\u2019t know I have it. They\u2019ll see me sitting in a caf\u00e9 or chatting with other parents at my son\u2019s school, and there is nothing in my appearance to indicate that I have a chronic illness. They don\u2019t know that I have to spend hours afterward resting after any trip, even just to my local coffee shop. They don\u2019t 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.<\/p>\n So mostly, when people see me, it\u2019s automatic for them to assume that I\u2019m healthy \u2014 or, rather, \u201cnormal.\u201d<\/p>\n And when it comes to an online presence \u2026 well, who could possibly guess, if I didn\u2019t talk about it? That\u2019s what makes it really hard.<\/p>\n I\u2019m 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\u2019ve made that decision for really smart and valid reasons.<\/p>\n Having an illness equals \u2014 in many people\u2019s minds \u2014 being \u201cweak.\u201d Who wants to appear weak, especially when you\u2019re trying to make friends or promote your writing online?<\/p>\n Being independent in the world \u2014 that equals strength and value in our society. And don\u2019t we all want to appear strong and valuable?<\/p>\n Having an illness that is still sometimes referred to as \u201cyuppie flu\u201d, something imagined to be purely in the heads of its victims (even though medical science disproved this theory years ago) \u2014 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.<\/p>\n And having a chronic illness in general \u2014 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<\/em>. But then there are the evil modern ones, those dastardly benefit-scroungers who are \u201cobviously\u201d 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\u2019t even count the number of novels I\u2019ve read where the detective heroes or heroines inevitably expose all those terrible fakers, all pretending to be ill just to get workman\u2019s comp or other benefits.<\/p>\n Who wants to be associated with any of those images?<\/p>\n So, I get it. I really do. I don\u2019t blame anyone for keeping their illness private and off the screen, especially when they\u2019re trying to promote their books or other work.<\/p>\n But \u2026 but, but, but \u2026<\/p>\n Last month, I got an email from a fantastic, bright, ambitious teenage girl who wants to be a writer. She wasn\u2019t 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.<\/p>\n Because here\u2019s the thing: she has debilitating M.E., too. She\u2019s had it for years. And she was so shocked \u2014 and so deeply, deeply relieved \u2014 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\u2019t 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.<\/p>\n 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\u2019s part of the email I wrote her:<\/p>\n I am sorry to hear that you’re also dealing with ME\/CFS. But yes \u2014 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 \u2014 I know other people with ME\/CFS who support themselves with web design, book cover design, etc. \u2014 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.)<\/p>\n Basically, it comes down \u2014 like so many things with ME\/CFS \u2014 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 \u2014 my husband and I are equal co-parents, trading childcare on and off throughout the day, and also our son goes to preschool nowadays \u2014 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.<\/p>\n 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.<\/p>\n 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*<\/p><\/blockquote>\n Every time I\u2019ve started to mention something about my illness since reading her email \u2014 on my blog, on Twitter or on Facebook \u2014 I\u2019ve still felt that automatic, instinctive wince that always comes up for me. (\u201cWait, should I mention that? What will people think? Maybe I should leave that bit out\u2026\u201d)<\/p>\n \u2026 But then I\u2019ve 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\u2019ve thought about how knocked off my feet I was\u2014so shocked and almost tearfully relieved \u2014 when one of my lifelong-favorite writers posted publicly about her own M.E. Of course I wasn\u2019t glad that she had it \u2014 I was horrified for her sake \u2014 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: \u201cI\u2019m not alone. I really can do this.\u201d<\/p>\n We all need to hear that, in life.<\/p>\n And so I keep on writing about it.<\/p>\n","protected":false},"excerpt":{"rendered":" A snarky New York Times column referred to CFS as \u201cyuppie flu,\u201d and oh, it was hilarious. Those silly rich people imagining themselves sick!<\/p>\n","protected":false},"author":33,"featured_media":1478,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[57],"tags":[58],"genre":[],"age_category":[],"disability":[84,34],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/210"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/33"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=210"}],"version-history":[{"count":0,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/210\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/1478"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=210"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=210"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=210"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=210"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=210"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=210"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}