Please Stop Trying To ‘Fix’ My ME/CFS



By Simone DM in The Mighty.


When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your misfortune or not trying hard enough to turn it around. In brutal terms, they see you as failing at life. (I know this, as I was healthy once and conditioned to think this way, too.) Worse still, people think they know better than us because they are well – so they must be doing things right and we must be doing something wrong – but I believe we were dealt a bad hand and they were lucky.

They patronize us by offering bits of trivia they’ve read in women’s magazines: “You should eat more turmeric… Have you tried juicing carrots?… What about acupuncture?” Seeing me use a wheelchair intermittently, onlookers assume I am simply deconditioned, and suggest physiotherapy, as if I don’t have the sense to come up with that myself. The fundamental flaw in that plan is that exercise can exacerbate symptoms of ME! Or more commonly, friends guess I am “just depressed,” and pressure me with positive psychology and sermons on the mind-body connection (yes, I’ve heard of it, thanks!).


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