I have published about Twitter and cancer in my book as well as in articles. However, it is not every day that the topic itself reaches global media coverage. Cancer is a disease which continues to be surrounded by taboos and its coverage is often about novel research or innovative treatment modalities. While we understand more and more about cancer, media coverage generally does not focus on the disease and Twitter. Enter Lisa Bonchek Adams (@adamslisa), a breast cancer patient whose cancer has spread to her bones and mother of three from Connecticut.
She has tweeted over 165,000 times (with many of those about her own cancer experience). She tweets about her current state (e.g. on January 4: ‘Very rough day here. Dizziness, weakness, pain. Need the tumors to shrink for relief. That will take time: chemo and radiation.’) and about media coverage of cancer (e.g. on December 30: ‘Articles about “defiant patients” who “refuse” to accept prognoses continue to reinforce the BS that attitude determines long term survival.’) for example. As I discuss in my book, there are many cancer patients, survivors and their family members who use Twitter to find out about treatments, side effects, or as a place of support. In other words, what Lisa Bonchek Adams is part of a much larger trend of cancer patients using Twitter.
However, Emma Gilbey Keller a US-based columnist for The Guardian took offense to Adams’ tweets and wrote a column (since removed by The Guardian) which argues that @adamslisa is sharing too much on Twitter and even goes so far as to say she is ‘dying out loud’. Emma Gilbey Keller wrote in the column, “Should there be boundaries in this kind of experience? Is there such a thing as TMI [too much information]?”. My work on social media clearly indicates that social media has shifted the boundaries of public and private and what is considered TMI now versus pre-Facebook and Twitter has changed quite a bit. Therefore, Keller’s argument seems out of context and disconnected with the Twitter Age we live in. Indeed Emma Gilbey Keller’s unsympathetic comment of “dying out loud” [“She’s in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud.”] misses the larger social context here, which is that we do quite a lot of things “out loud” on social media from announcing what we had for breakfast to how we are having a fight with a best friend. Ditto for births, deaths, and cancer diagnoses.
Bill Keller (Emma Gilbey Keller’s husband and former executive editor of the New York Times) weighed in via a column in the New York Times where he argues along the same vein as his wife, but went a step further, adding that she should die quietly rather than loudly on Twitter. Social media has been ablaze with angry responses from cancer patients, survivors, their family, and the general public. Besides his harsh condemnation of Adams, Bill Keller also makes an unnatural distinction between the online and offline worlds, emphasizing her writing as ‘tweeting’ rather than as an important form of publishing. And, there are many patients of terminal or other serious illnesses who publish and journalists don’t write about them ‘dying loudly’. This is a critical distinction as online writing is no less ‘real’ than the printed word, indeed broadsheet ink has become the minority today anyways! Moreover, publishing on Twitter is not intended by most Twitter users as broadcast to a wide audience. Rather, many use it as a form of diary writing or a means to broadcast to their specific, usually small audience of followers. Doctors often ask cancer patients to reflect on their experience to better their psychological health and some patients find Twitter to be an ideal outlet for this.
One of the values of Twitter and other social media is that they have been found to help patients of terminal and other major illnesses stay socially connected, whereas many often become socially isolated. Or as one study puts it:, social media “may help promote patient happiness and safety and serve as an educational platform.”. This has real benefits for health. Because cancer patients on Twitter do not usually have the goal of reaching large audiences on Twitter, but rather often use the medium as a diary or to form small support networks, they are often not trying to deliver a specific normative message. Or as @adamslisa tweets: “Why is she tweeting if it hurts so much?” I am sure people ask. It helps to distract me especially when I am alone (it’s 6 AM here).” This distraction through publishing on Twitter is something many cancer patients who tweet feel and there is research to support a net health benefit.
Though social media can have medical disinformation and is not always a good thing for all cancer patients, this is not a decision for the Kellers’ to make. Rather, it is a case for individual cancer patients and survivors.
To hear more of my take on Twitter and Cancer, you can listen to me on the BBC World Service.