I’m pissed off. I’ve had two friends bullied over their battles with M.E. this week, and that makes me really angry. These are positive, funny, kind women, who are trying, like I am, to navigate life with an incurable illness, that people who claim to love you (and, not uncommonly, complete strangers) feel is ok to instruct you on. Take a moment to consider perhaps, if you were suddenly struck with an illness that leaves you feeling like you’ve got the worst flu of your life, have a hangover to end all hangovers, and have run a marathon every day for a year, how you’d cope. Oh, and feel like that every day, with no end, often with little or no consideration of how ill you actually are. Now, have a think about how you’d feel if someone claiming to be well intentioned starts harassing you about your illness. And insisting they’re the wronged party when you call them out on their shit. Or that person telling you you’re overreacting. Nup, you wouldn’t like it much would you. You wouldn’t tell a cancer patient to “just get out more” or to “want something more”. You wouldn’t dream of it. Nor would you dish out treatment or management advice to them, or to someone who has say M.S. (Once called hysterical paralysis, a particularly misogynistic label, due to it affecting more women than men.), or Lupus, or Rheumatoid Arthritis. You wouldn’t tell a paraplegic they just need to want to walk more! You wouldn’t do those things because people with those illnesses or disabilities already have a battery of doctors running every conceivable test, prodding, poking, etc etc, and pumping them full of all sorts of medication in the hopes of finding a balance that works for that patient.

Chronic illness is so beyond hard. Way harder than anyone ever comprehends. Until they’re facing it themselves. It changes lives so much, that often, the patients often aren’t even sure who they are anymore in the grand scheme of things. Lives are irrevocably altered. But somehow, many of us do our best to find the little things that make us smile. Our lives are definitely NOT what we wanted, and hoped and dreamed, but for the simple fact that it keeps us going, we keep tiny shreds of hope. Hope that we can have a lunch with dear friends, or a few hours out every so often. We know those things are going to knock us about for days, or weeks, but we hope that we have enough fun, and laughter to keep us going until we can do those things next. My own doctor told me to keep doing the things I love, and that make me happy. Even if that means careful rest and pacing beforehand, and rest for as long as needed after.

Chronic illness is hard enough to deal with day in and day out, without unknowing, unthinking, and often outright stupid people making us feel like it’s our fault, or we’re too sensitive, or we’re not doing enough, or that we’re outright faking, when just surviving is all we can do some days. No one chooses this life. No one would. It’s not all oh I wish I could stay in bed all day. Or you’re so lucky you don’t have to work. To those I say yeah and fuck you. I wasn’t destined for this existence. I can’t call it a life. And nor were my friends. Lots of friends whom I’ve never met in person, but who have provided unfailing support.

Chronic illness is also loss. And trying to cope with that loss every single day.

So next time you open your mouth to a chronically ill person, pause for a moment and think about how you’d feel, fighting a battle every day, against your own body, which is attacking itself in all sorts of ways, just pause and ask yourself, is this how I’d want someone to speak to me if I had to walk the path of chronic illness?

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