Please Stop Trying to 'Fix' My ME/CFS

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 judgment, 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!).

Well, I am tired of everyone’s incessant questioning and spouting their uninformed opinions. What they don’t know is that, while I strive to remain hopeful, I’ve discovered there is no quick fix for any of my ailments. I’ve read every book on health and wellness I could get my hands on, searching in vain for answers, and still haven’t found the key to my healing. I am aware of most of the options out there, even though I haven’t gotten around to trying them all out yet. And while I haven’t found The Answer, I have found some answers. I can keep my symptoms under control. In fact, I excel in that area.

Like most people with ME, I’ve been forced to become my own doctor, nursing the red-faced, raging baby that is ME all day long. I self-inject medicine seven times a week to keep my condition stable and choke down supplements by the handful. While confined to my bed, I helped grow #MEAction’s grassroots movement for health equality, taught myself to speak Spanish and play the ukulele, and am proud to say I have almost finished writing my first novel. I’m not moping around at my parents’ home, shirking employment, as some like to imagine. The state of scientific research in this field may be failing me, and the lack of medical knowledge and viable treatment options is certainly failing me, but I am fighting this thing every day with all my wit and might, while trying to maintain my mind. Some days I laugh, some days I cry, and it’s a continuous painful struggle. But this is my life now – the only one I’ve got.

So people, even if you mean well, please leave me be and stop trying to fix me. And do us all a favor and stop talking down to ME patients. You don’t know who you’re dealing with! We’re strong, passionate warriors and we would do anything to have our health back.