Writing about multiple sclerosis does not always come so easily to me. Nagging thoughts tiptoe through my mind every time I merely mention it online – you’re giving it too much attention, other people are going to think you have nothing else going on…
I, regrettably, harboured my own negative perceptions of other people’s blogging and Instagramming about MS for many years after I was diagnosed, only recently realising those feelings stemmed from my own misguided understanding of strength. I resented others for being so open, for allowing it space in their lives – something I then, and others still, perceive/d as “giving in”. I wanted to say, “Stop making it bigger than it has to be. Get offline and live, you fools!”
I was the fool. I had been tricked, as we all are, into believing that illness and disability are a rare misfortune – messy stains upon an otherwise perfect idyll. Something to be hushed up; fought against; hidden; ignored.
But show me a human who has never been sick. Isn’t this just one part of the human condition, a common lived experience much akin to love, and death, and birth, and taxes? Yet there seems to be something discomfiting when it comes to writing about chronic illness, in a way that doesn’t apply to any of our other shared experiences. Virginia Woolf, in her essay On Being Ill, describes our “poverty of language” with regard to the human body;
“Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. There is nothing ready made for him, he is forced to coin words himself, and, taking his pain in one hand and a lump of pure sound in the other, so to crush them together that a brand new word drops out.”
It is true, our language has (rather tellingly) evolved with a stubborn denial of ill-health (I’m perpetually on the hunt for new words to describe pain that is neither sharp nor dull – the only two adjectives we have, apparently). But the silence is thanks to more than merely an inadequate lexicon.
Take a stroll through the history of our society and you will find a conscious link between being healthy and being virtuous. Vitality and morality are one and the same according to patriarchy, religion (Protestant work-ethic, idle-hands etc), and, more recently, Capitalism. As Lucy H. Pearce states in her book Medicine Woman;
“The ideal in our culture is to be the beautiful, healthy, wealthy person. So in a culture that does not acknowledge its own complicity in every level of our illness, the blame for illness again can be laid at the feet of the individual: they are the loser, the weak one, the victim. They are in need of our pity or our disgust.”
It is no surprise that the existence of chronic illness in mainstream media has been negligible, with what little discourse there is used to bolster one of three primary objectives:
- To highlight the economic and societal hardships endured by us pitiable sick, as case studies on the gross inequality and poverty that exists within our communities.
- To paint us, the villainous sick, as benefit-scrounging work-shirkers responsible for the gross inequality and poverty that exists within our communities.
- To showcase the achievements of the inspirational sick, who have overcome everything that is wrong with their bodies, and found a way to commodify their existence after all. (So what’s your excuse?)
With around one billion Disabled people worldwide, we are not so much the occasional dropped-stitch, but rather an integral and enriching part of the fabric of humanity. Capitalism (and patriarchy and religion before that) has pulled off an incredibly powerful marketing strategy that has succeeded in casting a collective ‘us’ as collectively ‘Other’ from the separate, collective ‘them’ (the healthy, beautiful, virtuous, economically valuable…). Ah, that age-old “us and them” ploy, used to divide, distract, and control the masses. And I, for one, had fallen for it – which brings us back to why I have felt so much hesitation writing about multiple sclerosis. (Unless, of course, writing about all that I do in spite of MS)
But I refuse to be kowtowed into not talking about *it* too much – not by my own internalised shame, and certainly not by a society of hypocrites. Chronic illness happens to be the foundations upon which everything else in my life is built, not some ramshackle extension I can enter or leave as I please. This boring reality is non-existent in popular culture – sure, there have been occasional MS storylines (I keenly remember one about a wife who murdered her paralysed husband by injecting an undetectable poison into his numb foot as he slept because he was a burden, while the rest usually focus solely on the turmoil of a diagnosis before occasionally returning to the odd emotional breakdown after the character in question drops a glass of water), but nothing ever portrays the mundane, lonely, beautiful life that is day-in, day-out with well-worn chronic illness. An inclusion that might serve to blur the line between aforementioned “us and them”, as well as demonstrating to the many who live with chronic conditions that we are not the sad mark upon an otherwise pristine world that keeps us plagued by discomfort, shame, embarrassment, grief. An inclusion that would proclaim a large part of our lives need not be shrouded in secrecy, aspects of our realities only carefully spooned out with infrequent, polite discretion.
To once again quote Lucy H. Pearce from Medicine Woman;
“We are neither explicitly taught nor supported in our culture how to navigate illness, physical or mental decline or change, as an integral part of moving through life, precisely because illness is seen as degenerate, sinister, a threatening other state of being to be avoided. We are not shown how to move through illness internally, how to assimilate its changes or how to engage spiritually with it. We are merely taught to avoid it, and to fight it: to resist change at all costs.”
Illness as Other is one of the biggest cons that has infiltrated the rise of our civilisation (as is Health as one fixed state, but that’s another blog post). And it is a con that doesn’t only neglect those of us living with chronic conditions, but every single person as our population ages and “healthy” adults are suddenly faced with a myriad of physical problems to which they are immediately resistant (and, confusingly, always shocked by? It really is like Capitalism has succeeded in convincing us that we are, in fact, not human beings at all).
No, writing about MS does not always come so easily to me. My own emotions hijacked and interwoven with hundreds of years’ worth of shame and stigma. But I have had enough of being so cruel to the “soft animal of my body”. So dismissive, and unaccepting, and ashamed. Were I to blog about books, or restaurants, or second-hand clothes, no one would assume my life revolves solely around that one topic, no one would feel uncomfortable about how frequently I may or may not mention it – I want to feel no less confident giving my chronic illness as much attention as it deserves.
 Mary Oliver – Wild Geese