Challenging Illness Narratives Through Writing

by Emily Underwood-Lee

When we are diagnosed with a life threatening or limiting disease we are often told to “keep our spirits up”, “stay strong”, “be brave” or “fight it”. These pervasive cultural narratives suggest that the power to change our prognoses lies with us. It is suggested that our negativity or fears will be made manifest in our illness and we will succumb to disease simply because we didn’t face it with positivity or battle hard enough. Clearly this is untrue. This attitude that a cheery disposition will help us get better is a fallacy with no basis in medical treatment at all. So why is it that we still keep hearing and telling these stories?

I believe that we say these things because we need to. First and foremost, illness is frightening, for the person diagnosed and for those around them. The ill and dying remind us of our own vulnerability to death and disease. Artist and academic Brian Lobel notes, “people want persons affected by illness to be stronger, smarter, more carpe diem-y” (Lobel, 2013, pp157 – 158). We need those who are ill to present it as a positive, to be the heroic survivor who prospers from their misfortune by finding a new wisdom and zest for life. In doing this, they mitigate a little of the threat that we all feel when forced to confront our own mortality. Jackie Stacey, in her important work Teratologies (1997) explores the common depiction of cancer patients as either heroic survivors or tragic and noble victims, again highlighting this need for us to make disease mean something. Arthur Frank goes so far as to say that all illness stories fit into categories of either “restitution”, “chaos” or “quest” narratives; here again, our cultural default is for stories which position the ill as heroes or victims (Frank, 1995).

When I received my own diagnosis of breast cancer I was pregnant with my daughter. The weight bore down on me, from my friends, family and even people I barely knew, that I should keep upbeat for myself and for the sake of my unborn child. “Stress is bad for the baby”.

Well, I’d just been diagnosed with breast cancer and was facing the choice of either having a full term pregnancy but no chemotherapy or having an extremely premature baby delivered by ‘elective’ c-section and having cancer treatment; I think I had a right to feel a little stressed! I wanted to be neither brave, nor strong, nor cheerful. I did not want to be heroic or noble or inspiring. I didn’t want to wear pink, walk or race for life, climb Mount Kilimanjaro, look good feel better, promote breast health, fundraise or help others. What I wanted to do was collapse on the floor, sob, rot my brain in front of daytime television, not bother washing, watch Dirty Dancing over and over again and eat custard doughnuts.

I also wanted to write.

Writing gave me a place to challenge the dominant narratives I felt I was expected to live up to. I could mark myself as a person with a life before and after cancer, and fictionalise and determine that life in the way that I chose. If I wrote the script I decided what happened. I was empowered to portray myself as tragic, heroic or more complex, to tell my story as one that ends with life or death or to be not so neatly tied up. Not only did writing give me a space to define myself but it also gave me control in a situation where I knew I was powerless. Despite the maxims being doled out by everyone I encountered, I was acutely aware that my life and the life of my child were entirely dependent on the skills and knowledge of my medical team. But when I wrote I momentarily reversed the power structures of the medical encounter where the patient is in the hands of the doctors who give or withhold prognoses. Stories can give us hope whether we are patients ourselves or are temporarily well but reminded of our mortality by the presence of the ill around us. This may be a false hope but for a fleeting moment we can be in control of our outcomes and our representation. And perhaps most importantly, in writing and reading we can find places to express our needs without burdening those already suffering.

Emily Underwood-Lee is Research Fellow at the George Ewart Evans Centre for Storytelling at the University of South Wales (www.research.storytelling.southwales.ac.uk). Her areas of interest include performance and the body, feminist performance art, narratives of illness, autobiographical performance, performance and the maternal, and performance and disability. Emily has created and toured two performances about her experience of breast cancer. For more information on Emily’s artistic practice visit https://emilyunderwoodlee.wordpress.com/

One thought on “Challenging Illness Narratives Through Writing

Leave a Reply