Decolonising the language of illness

The Ailing Body


Hannah Clarkson

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
– Susan Sontag, Illness as Metaphor

My own body was a site of conflict, a battlefield, colonised for years by invaders who had never even left home. Natives turned against their inherited land, attacked from the inside out. Stealthy at first, yet accelerating imperceptibly toward a denouement of destruction, an eating away, slowly, of all their ancestors had over years striven to build. At the age of 24, I was growing backwards.

An autoimmune condition has been companion to my adolescence and adulthood since the age of 14. It makes me tired, a dull pain in my head each day until I could not, cannot, remember what it feels like when the fog is not there. I zone out sometimes into other planes where my body is not so heavy, not so weighted in its chair.

Pins and needles. An attempt to mend, to stitch back together, but this is an embroidery which is taken too far, takes over the fabric of my skin and tangles my flesh, pierces pinpricks in muscles so they ache and twist and groan. These are pictures I never wanted, tattooed on my bones.

At first, those first years, I ignored it, ignored the creeping fatigue that marked me out from the others, fought hard to pretend I could keep up, armour a disguise to fight the difference away. I always said yes when my body said no. Rest was not an option. Stopping meant defeat. I feared if I lay down, my limbs would not let me up again. Increasingly, so focused on my efforts to affect the energy of my peers, I forgot to eat.

Fast forward the best part of a decade.

And all of a sudden I was shrinking. Fifteen kilos of flesh gnawed away until all that was left was tendons and marrow and a brain smaller and slower than it was before, though more anxious, more constricted and controlled. A broken body and a mind conspiring to fight one another, to destroy themselves. An immune system turned in on itself, cells proliferating as their safe house crumbled, façade dulled, and organs struggled to power the corpus of home. Protection was attack and care a misplaced empathy, a kind weapon of metabolic malice and mournful mending.

But this was my body, and I wouldn’t let it win.

Yet, how does one decolonise one’s own self? What knowledge is produced in one’s own ailing body? Am I safe here? What language do we have surrounding sickness, and how can we create a new, less damning vocabulary? This will be a decolonising of the body, the mind, by and from and towards oneself, and the society in which the body dwells, a part of and apart. A reclaiming and an acceptance, is this a working with, or a striving against? What is difference between caring for and protecting from? Living in and as and with this fierce, fragile body, what do I learn?

I learn that I cannot do this alone, though only I can be it. I learn that empathy is not only a personality trait, but a learned action, born of experience, not only a noun but a verb. I learn that I am not superhuman, the shelter of my body not a given, I am not invincible. I learn that to decolonise, there must be new words to describe this otherness which is not an otherness, but an experience, an ‘onerous citizenship’ many people, in different mappings and different bodies, have. I learn, I embody, I attempt to decolonize, to re-citizen my body as a shared site which is my own.

Writing the body

Where does it hurt?