Introduction to a Doctoral Project about Living with CLL
Often invisible to the outside world, widely variable in prognostic outcomes, and currently considered incurable, a diagnosis with CLL demands constant negotiation between the concepts of “wellness” and “illness”. From my own diagnosis with the disease in 2011 it became clear that we CLL “patients” occupy a unique position at the crossroads of exciting advances in biomedical approaches to the disease, and communications technologies that allow us to share knowledge and experience.
“In the Blood”, my doctoral project, explores an online support community as a “hub” of knowledge and support exchange. From complex medical research papers to individual accounts of living with the disease (and much in between), the project will document the various stories that come together in the online support community, enabling users to make collaborative sense of a chronic disease that shapes our lives.
Apart from identifying the key themes that occupy the lives of those living with (and around) CLL, IN THE BLOOD the project looks at the relationships between research, clinical, and patient perspectives in the dialogues of support communities. How are we translating and utilizing the advanced information at our fingertips? How are we supporting and educating each other? How are we contributing to raising awareness of the disease? What impact is this having on our relationships with our clinicians and carers? Through this approach I aim to show how biomedical research, clinical management, and popular cultural beliefs about what it means to live with cancer translate to everyday experience for those of us living with
I am really excited to have the opportunity of sharing my work in progress with you in Cardiff in January, and look forward to seeing you all there and hearing some of your own perspectives and experiences.
BA (Hons) Journalism
University College Falmouth