And don’t we all want to appear strong and valuable? 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?īeing independent in the world-that equals strength and value in our society. They’ve made that decision for really smart and valid reasons.

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. So mostly, when people see me, it’s automatic for them to assume that I’m healthy-or, rather, “normal.”Īnd 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. 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. They don’t know that I have to spend hours afterward resting after any trip, even just to my local coffee shop. 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. is an “invisible illness,” one that isn’t obvious at first sight. Today, though, I wanted to talk about why I talk about it.

I’ve talked elsewhere about what it’s really like to have M.E. “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. (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. I even read particularly scathing, sarcastic bits out loud to my parents.Ībout ten years later, I was diagnosed with M.E./CFS. Those silly rich people imagining themselves sick!

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

A Reckless Magick by Stephanie Burgis