My Digital Death

We are constantly bombarded by social media announcements of all varieties – holidays, weddings, births and lunch choices. Certain research has indicated that we check our phones some 70 times a day and a few of us might even admit to a gnawing angst when we’re separated from our technological lifelines. In a time when we have become so accustomed to sharing every detail of our lives with our online network, why wouldn’t this include a terminal cancer diagnosis?

My Digital Death is a quick, 15 minute, view into a world where social media and cancer meet, with patients capturing and sharing hospital visits, surgical procedures, post-operative care and the complexities of transplantation. In a particularly poignant moment we see Fiona, a 31-year-old woman diagnosed with stage 4 ovarian cancer, drawing on herself in a YouTube video to illustrate to her followers where she will be having surgery and what organs will be implicated in the procedure.

We also meet May, a 23-year-old mother awaiting a bone marrow transplant for acute myeloid leukaemia (AML), and 28-year-old Laura, preparing to marry her partner while managing widespread metastases stemming from a diagnosis of stage 4 breast cancer. The intimate moments these individuals share are available for anyone to view and comment on, with all three women describing a feeling of being buoyed by this interaction. For these younger patients, the ability to connect to other people through mainstream media seems to break the confines of a potentially isolating diagnosis. 

Inevitably given the ‘bite sized’ approach, I find myself asking more questions. I want to know why these individuals started vlogging about their health, how they handle any negative feedback, and whether there are any topics off limits to public consumption. I also wonder how they manage the pressures prevalent in social media to present the best image of ourselves at all times.

All three participants are relatively young and by the nature of the film, they are already fluent in the cancer conversation. The flipside to this of course is that there are patients who choose not to engage, who do not want to publicise their health status, or who would prefer to join a traditional support group for more intimate reflections. It would serve as an interesting, and perhaps more reflective, comparison for the audience to see these different coping styles.

We traditionally focus on face-to-face groups as a means of peer support within the cancer setting but this film illustrates how some patients are migrating to online exchanges with a widening net of digital engagement. While this is only a very limited snapshot, it does raise questions about the motivations and benefits of using social media to document illness. This interaction could be explored further to better understand the way patients, and the audiences they reach out to, conceptualise the cancer experience.

Rachel Starkings is a Psychosocial Oncology Research Fellow based at the Brighton and Sussex Medical School. (Opinions expressed are solely my own and do not express the views or opinions of my employer.)

My Digital Death is available to watch via BBC iPlayer