I don’t like being told what to do. Or how to behave or how to look, but that is just the way it is in this world for everyone. We are told and tell others that a skirt is too short or a shirt too tight, to dye grey hairs or not to dye grey hairs, wether because one is too old for dyed hair or one should not give in to the pressure of the beauty industry.
Even though I didn’t like being told similar suggestions, they never truly bothered me. I haven’t lost any sleep over it. That was, until I got ill.
Almost twelve years ago I was hit by a mysterious viral infection and never recovered. When weeks turned into months turning into years, people’s suggestions started to hurt. Apart from being told not to dress shabby and shave my legs, I was blamed for being selfish, told to be more social and to make coffee.
During the day I am lying on the sofa, but on one particular day I felt so horribly ill I decided to go to bed. At the same moment visitors arrived unannounced. After explaining how I felt, they still urged me to make coffee. I was about to go to bed in the middle of the day. What part did they not understand? No coffee was served that afternoon.
But of course, most suggestions were about a possible recovery: about supplements and therapies, what to drink or what not to eat. On and on it went, no matter how questionable. If the mailman’s daughter’s friend’s cousin miraculously recovered from something by walking the stairs backwards seven times a day, I am sure someone would have told me to do just that. To at least give it a try.
One might think I am shielding myself from advise or that I am ungrateful for people caring for me. They might have been thoughtful and their suggestions well intended. I was not hurt by a friend who read something in a magazine that might be helpful and saved it for me. But I was offended by people who kept pushing me. Never once started, yet another, suggestion with the words ‘this is your life and I love you for who you are, perhaps you might want to consider [this or that].’
For as long as there has been mankind, human beings have been telling fellow human beings to be good – not slutty, not fat and not ugly. Ladies and gentlemen, after slut-shaming and fat-shaming… I give you: fail-shaming. No, don’t put your hands together, because it hurt. I felt ugly, filthy and incompetent, while struggling for my self-determination. It was as if I scraped my hands and knees for being put in that position.
Of course I am failing. Will the one person who never fails, please step up to the podium?
Somewhere a line was crossed. There were people wishing me to get well at one end of the spectrum, and the tyranny of implying I was failing, at the other. Ultimately, at the saddest part of the spectrum, me not being obedient was all about control. Different people can be in different parts of the spectrum at different moments in time, this is as much confusing as it is hopeful. But one thing is clear, whether or not you are dealing with a troublesome health: your body is yours.
I was diagnosed with Myalgic Encefalomyelitis (this can be considered madness, due to a lack of funding research), an enigmatic, chronic illness. Plenty of information can be found online, but don’t let me tell you what to do. If you choose to look it up anyway, do you think you could make up your own mind? Your opinion is yours.
My Body is Mine (12 x 19 cm.) by Fleur Duivis
Dutch translation will follow (hopefully soon).
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