‘You Don’t Look Sick’

Abstract: ‘You Don’t Look Sick’ is a piece of visual-poetry about fibromyalgia, a chronic pain disease I have experienced for 16 years since the age of 21. Linearity cannot explain how pain dances in my body. Poetry, therefore, takes its place to transform the communication of my inexplicable health issue with GIFs of myself. More than 90% people affected by fibromyalgia are adult women. It is a gendered health issue that challenges classic medicine—its pathophysiology is still unclear. This work aims to start a conversation about empathy—how we know and live together.

Keywords: invisible disability, ephemeral body knowledge, chronic pain, immobility, medical challenge


It comes suddenly

Pain.

It is unpredictable

Fear.

It changes rules

Trickery.

‘But… you don’t look sick,’ people tell me with a very surprised facial expression.

Doctors call it fibromyalgia, a bio-psychosocial syndrome largely lived by women who identify as cis. It is medically opaque. It is defined as a chronic condition of unknown aetiology, characterised by persistent, widespread pain, fatigue, cognitive dysfunctions, sleep disturbances and psychological disorders.

Medicine also explains it as a neurological misinterpretation of the message of pain. It is like having a drunk, emotionally overwhelmed brain, which randomly thinks it is feeling pain and creates perceptions as a result. The mind points at the body, while seeing the body pointing at itself, looking for the culprit in an eternal mirroring effect.

A Disability.

Female

Body

Mobile

Pain

Survival.

My body is a field that mutually welcomes and creates states of crisis. 

I am the victim and the hang(wo)man of myself.

The context and its emotional surroundings shape both my body and mind like a historical corset. I live in a perpetual liminality where changeability and acceptance become my forced normal. Any planning can be suddenly disrupted.

The affects affect me.

In a limbo between dichotomies, I swing between optimism and melancholia; hyper-visibility and invisibility; normal and abnormal; able and disable.

If I do not move, I have pain; if I move too much, I will be immobilised by pain.

My body rebels against the mind’s rule. Through pain that it knows before my brain.

The pain pain(t)s my body as a flesh canvas.

Like anxious ants in and out of their anthills, pain is migrant.

When a person asks me: where do you have pain?

I answer: Now, it is here, and there. Now it came here, and here.

Pain wanders in my muscles and tendons, hitching, squeezing, and poking my constant rest.

I feel it,

you cannot see it.

‘You don’t look sick.’

Vision is historically associated with knowledge: from the Latin, videre, it implies evidence.

Since my disability is invisible, is my pain real or the realm of my invention?

I express the absolute relativism of a sick phenomenological performance.

Pain is an event that offers to represent its alive body subjectivity, claiming its peculiar uniqueness that digs a grave for the medical desire to control.

I am the miscarried child of the imperialistic health imaginary

a universal cure cannot exist.

I embody the failure medicine does not want to accept.

Pain irradiates epidermically, or more deeply through chronic constant muscular spasms, subtle enough to not be visible, strong enough to be constantly perceived.

You don’t look sick…

Yes, I don’t.

I am a lived and performed embodied contradiction.

Maica Gugolati

Maica Gugolati is a researcher, author, and art curator who engages in experimental collaborations with artists from the Majority World. She holds a doctorate in social and visual anthropology. In addition to academia (anthropology and philosophy), she studied photography. She is co-editor of the Decolonial Dialogues educational blog and the African Diaspora journal, published by Brill. She is an affiliated researcher at the Institute of African Worlds, France, and a member of AICA Southern Caribbean. She works between contemporary art practices, performance studies and anthropology.