Erased: Representations of women's bodies in chronic invisible pain

Stories of pain stretch metaphors and similes. They infuse verbs into the narrative—it stabs, it burns, it aches—in a desperate attempt to describe what the pain is doing in the body. There is a critical need for accurate communication, either to family and friends, or more importantly, to healthcare professionals. Yet often this crucial connection fails. Honesty about chronic illness and related invisible disability is repeatedly met with confusion, dismissal, or even disdain. So where is the problem? Where is the disconnection occurring? Elaine Scarry argues that pain’s personal and life-destroying nature is nearly impossible to communicate, because its very existence within the body destroys the language needed to express it. This is true. Often pain dismantles our whole world. We are left only with a guttural scream or the expletive. However, Joanna Bourke argues, ‘people in pain are often highly creative in expressing their suffering’. We use all the words we need to clearly communicate. This word communicate is important. It has three elements: a sufferer, a witness, and a gap between them. A strange distortion often occurs within this gap; it is polluted with static. While I will be considering the difficulty sometimes experienced in expressing the reality of pain in our bodies, much of this thesis interrogates the gap. My research focuses on women in chronic pain because women are four times more likely to have a chronic illness and seven times more likely to have their symptoms misdiagnosed or dismissed as emotional and therefore unreal. This bias is pervasive and needs interrogation. Storytellers are uniquely positioned to provide a voice for the voiceless while simultaneously challenging what is considered normal or ideal. I am concerned with the ideals that create expectations about what “healthy” and “ill” mean and even what it means to be a “normal” woman. These expectations all converge on the body and the lived experience of the chronically ill woman, labelling her at best a failure and at worst a liar. The questions I am asking, then, are: How can we communicate chronic pain? How can we help others to listen to what we are communicating? What needs to change within our cultural belief systems in order to understand women with chronic pain? What within our social structures is excluding these women? How is this isolation compounding the suffering of women in chronic pain? And, finally, how can storytelling help address these issues? My research is specifically focused on contemporary narratives of chronic pain. This is because I am interested in representations that reflect current attitudes and social structures. I examine these texts not only for evidence of authentic representation of the lived experience of pain but also for ways in which the suffering of these women can be alleviated. While I cannot cure chronic illness, I can offer insight into the constructed cultural beliefs that can be dismantled to make a more inclusive world. I believe art has the power to do this, and I believe we need more authentic stories to represent women suffering from chronic illness. However, stories of chronic pain and disability are often chaotic. Unlike the familiar cure-or-death endings of traditional disease narratives, these stories have no resolution, and audiences often reject them. When research participants are told a chaotic story of pain and disability, they rewrite it, so desperate is their need to erase the suffering. They long for a hero who overcomes all adversity. This means that illness stories often set impossible standards, isolating women in pain even further. Therefore, my research includes a creative component. I have written a novel that embeds the chaos of chronic pain within a quest narrative, to anchor readers to familiar structure, and yet offers an authentic voice for those who need representation. There are two separate narratives. The first belongs to Amanda, who has been summoned by the universe (or her cell-phone, she isn’t sure) to find Kelly Wisely and wish her a happy birthday. The second belongs to Kelly Wisely herself, whose pain has thrown her narrative and her life into chaos—her narrative no longer obeys time, nor can it hold any real structure. Her life is in fragments