Like rain, sickness falls upon us all, rich or poor, black, Indian, mixed race and white. Whilst it is important to acknowledge that some have the privilege of umbrellas, others the misfortune of having to utilise plastic for cover and still others live with the sheer injustice of having nothing at all, the universal experience of illness is undeniable.
What is less recognised however, is the expression of illness. Attempts at emoting illness are overwhelmed and buried beneath heavy medical terms of diagnosis, of viral loads, of CD4 counts, antiretrovirals, tumours, insulin and treatments written illegibly by doctors on prescription pads. “Those who are ill do not speak in their own voices. They are represented but do not represent themselves. Others speak for them, drawing illness definitions, classifying illness experiences, and setting the rules for what is believed.” (Foucault 1980 as cited in Lagerwey & Markle 1994 pg127).
The ways in which chronic diseases are spoken and written about are further alienating to the very people living with those diseases. Ignoring the intertwining of one’s identity to an illness. Undermining the intersectionality of race, gender and sexuality that determine certain bodies more vulnerable than others. That positions me – a dark skinned young African woman as the typical face of human immunodeficiency. The emotional manipulation through campaigns of various medical institutions and some NGOs further enforce ideologies in their language, naming some as “survivors” and others as “victims”.
I believe a deeper and more nuanced understanding of illness will be effectively reached through an expression of illness that goes beyond the medical and unpacks its chronic complexity. Discussions about disease must expand past biological bones and blood to elaborate on the emotional and lived experience.
Throughout the ages storytelling has been a universal action, and specifically for me it is a therapeutic endeavour. Beyond the direct telling of stories, we are born into complex communal narratives and furthermore experience and understand our lives as stories we are living out (Bury, 2001). I am sure that I am not the only one who analyses my life as chapters in a possible novel, actively writing, reading and living it. When considering storytelling and illness, as mentioned before, there is an absence of illness narratives that centre the emotional and psychological lived experience. Considering how common illness is, Virginia Woolf questioned the absence of illness as a major theme in literature, “one would expect novels devoted to influenza, epic poems to typhoid, odes to pneumonia, lyrics to toothaches” (Woolf 1967 as cited in Lagerwey and Markle, 1994 p121).
I believe there are many profound pieces to be written on all sicknesses, yet I shall focus on my lived experience with HIV and AIDS. I’ll be doing this through a project called Antiretroviral Therapy (ART), which will consist of prose, poetry and performance, that which Virginia Woolf called for years ago. I will not be the first to answer her clarion call. Following in the footsteps of my greatest idols, Audre Lorde, who wrote “The Cancer Journals”, along with many other writers and social scientists who have worked to elaborate on illness beyond the boundaries of bio-medical narratives.
The exploration of illness narratives, specifically chronic illness, shines a light on the nature of experience, its meanings, and actions taken to deal with it. Furthermore, the narratives reveal a set of important issues that deal with links between identity, experience and culture (Bury, 2001). As someone who loves sociology I could not tell a story without a sociological underpinning, hence ART is almost a study on myself living with HIV within our current society. I intend to unpack intersectionality in terms of illness, looking at what it means and the vulnerabilities that arise in a capitalist and white-supremacist society when one is black (African) and a woman living with HIV.
I must emphasise that ART is subjective and I do not claim to speak for all HIV positive black women. I must also caution that the project is not the traditional red ribbon positivity that is consistently being touted, though I agree completely that one can live a full life with HIV. The project’s primary aim is to express and not necessarily educate – it will not function as a Life Orientation class; however, it is open as an opportunity to learn. Staying on that note, ART is not a project that will give medical advice and anything I may state regarding medical aspects of HIV will definitely need a second opinion. What I really want from this project is for people to feel and think – to feel and think differently not just about HIV and AIDS but all chronic illness.
I am hoping to bring illness to the surface, where it is acknowledged as a legitimate human experience not to be spoken in shame or hushed hospital voices. Expressing and thinking freely about illness will, I believe, bring fuller conceptions and discussions on what health actually is. Health not as dictated by capitalism but understanding health radically, understanding self-care and self-preservation beyond the physical, understanding care as resistance within our very individualistic society, and getting a grasp on what it takes to heal over and over again, as one does when faced with a chronic physical and/or mental illness. As Nayyirah Waheed points out, “self-care and healing have been written out of so many of our cultures and yet are critical components of how a human being stays alive.” Responding to that I say, in writing self-care and healing back into culture we must not neglect the expression of illness as it literally threatens every aspect of a human being’s life.
ART aims to fulfil all the above mentioned purposes but if it fails in that mission, let it be known that it has already fulfilled the crucial purpose of amplifying what was becoming the dying courage of my voice. In doing so, it will have prevented a diagnosed body, tainted blood and a societally deemed irrelevant identity in illness, from dying in silence.
Bury M. (2001) “Illness Narratives: Fact or Fiction?” Sociology of Health & Illness 23(3) Pages 263-285
Lagerwey D. & Markle G. (1994) “Edith Wharton’s Sick Role” Sociological Quarterly 35(1) Pages 121-134)