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Bill Keller, pictured in 2005. (Gerald Herbert/AP)

Much has been written over the past few days in response to former New York Times editor Bill Keller’s op-ed piece on Lisa Bonchek Adam’s use of social media in actively sharing her experience of living with stage four metastatic breast cancer. In his piece Mr. Keller wondered why someone would choose to disclose so much about living with a progressive chronic illness in such a public forum. Perhaps I can offer some insights into this question.

As someone who studies social media in the context of chronic illness, I have been fascinated with the level of interest and debate Mr. Keller’s opinion piece has generated. Over the past few years the number of social media users has exponentially increased. We have become a connected society with instantaneous access to status updates, tweets, and posts. In his book “The Tipping Point” Malcolm Gladwell writes that “a critical mass needs to be achieved before an idea, trend, or social behavior crosses a threshold, tips, and spreads like wildfire.” Perhaps that time has come in the evolution of social media’s role in living with progressive chronic illness.

A few years ago my colleague, Lisa Gualtieri, and I began to study what was at the time a new phenomenon — blogs written by individuals with chronic illness. Our paper, “Communicating the Experience of Chronic Illness and Pain through Blogging,” which was published in the Journal of Medical Internet Research in October 2012, remains one of the largest studies to date of illness bloggers (230 respondents). We were interested in what motivated individuals to share so much of their private lives in such a public forum. What we discovered was that for many patients the process of blogging shifted their relationship with their illness, decreased their sense of isolation, brought meaning to their lives, and linked them back to the outside world.

for many patients the process of blogging shifted their relationship with their illness, decreased their sense of isolation, brought meaning to their lives, and linked them back to the outside world.

A chronic illness may set one apart from the healthy world in which one previously resided and leaves one attempting to find balance in unfamiliar territory. In the not too distant past, the word “cancer” was rarely spoken aloud and secrecy surrounded the diagnosis. In a 1961 survey of 219 physicians in Chicago, 90 percent said that they would not disclose a cancer diagnosis to a patient. Attitudes toward disclosure of serious illness have slowly begun to shift over the past decades, however a stigma remains that often separates and isolates an individual living with a disease like cancer from the rest of society. It is disconcerting to our worldview to acknowledge progressive illness and ultimately death and we may express discomfort at the public nature of this disclosure. Perhaps Mr. Keller’s opinion piece is influenced by the culture of silence still surrounding cancer and other life-limiting diseases.

Research has suggested that the ability to share one’s narrative is powerful medicine, often increasing the perceived quality of life for a patient and family. Dr. Rita Charon, director of the Program in Narrative Medicine at Columbia University, writes:

“These divides between the sick and the well are unspeakably wide. Leveraged open by shame, rage, loss, and fear, these chasms can be unbridgeable. And yet, to get better, the patient needs to feel included among those who are not ill. The sick person needs to continue to be, somehow, the self he or she was before illness struck. For the sick patient to accept the care of well strangers, those strangers have to form a link, a passage between the sick and the healthy who tender care.”

Social media creates a vehicle for sharing that was unimaginable less than a decade ago. Instead of the reflective process of traditional writing or journaling, social media affords the opportunity to connect and respond to the outside world as well as reflect upon the internal, personal experience of illness. Like Adams, nearly 90 percent of illness bloggers in our research shared their blogs publicly. In fact, our research revealed that patients’ use of social media evolved over time, often shifting from information gathering at the early stages of illness to reflecting, advocating, mentoring  others later in an illness trajectory. In the words of one of our survey participants, “First I was helped and now I am helping…a reminder that I am part of the world.”

Social media creates a vehicle for sharing that was unimaginable less than a decade ago.

Perhaps we have achieved a tipping point and have entered a new era; one in which an individual with chronic or life-limiting illness need not suffer in silence or in isolation. Perhaps the divide between those who are ill and those who are well can be bridged by facilitating a connection with the outside world through online portals. Social media, in the form of blogging or other platforms such as Twitter, will never, nor should they, take the place of face-to-face connection but may provide tools of connection  and understanding when in-person connection is limited.

Thank you to Lisa Bonchek Adams and the other bloggers out there who choose to share their journeys with incredible grace, dignity and courage and thank you to Bill Keller for writing the opinion piece that started such a lively discussion on the role of social media in illness. Each of us travels our own path in determining what we wish to share with others, let us respect and honor the choices that may differ from our own.

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The views and opinions expressed in this piece are solely those of the writer and do not in any way reflect the views of WBUR management or its employees.

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  • kathy kastner

    Thank you Pam – and Lisa Gualtieri – for sharing your data and for weighing in. For me, best thing about the maelstrom provoked by Keller’s column is the spotlight puts on what’s become an invaluable source of support, information, insight.. not to mention an act of courage and selflessness: blogging about and through life changing illnesses. The positive effects and impact are exponential. A reminder to those who disagree: no one’s forcing you to read ‘em.
    Kathy Kastner http://www.bestendings.com

  • Helen Osborne

    Thanks for this extremely will written, thoughtful, and informative summary about the intersection of social media and illness. I hope that Bill Keller and his wife (who wrote a similar column) see your article (ahem, blog posting).

  • froxgirl

    Not ever really fond of Bill Keller anyway.

  • Lawrence

    Wow, such a powerful and often overlooked subject matter.

  • http://www.mightycasey.com/ MightyCasey

    Humans connect by telling their stories to each other. You’d think Bill and Emma Keller would get that, since they’re journalists (= professional storytellers), but I guess they missed that memo.

    Hard to believe that they were as tone-deaf as they were, and seemingly continue to be, since there’s been nothing but silence from their quarter since Keller homme posted his defense of Keller femme on Jan. 12 in the NY Times.

    Suffering in silence is SO 19th century. A great gift of the internet is the ability to connect across all barriers – borders, economic status, ethnicity, whatever – to share common stories and seek collaboration on solving problems. What better use than peer-to-peer healthcare intel sharing?

  • Jeri Burtchell

    I was diagnosed with MS in 1999. I spent the next 8 years relapsing constantly and I was contemplating suicide when I decided instead to join a clinical trial. Being a hypochondriac, I was terrified of ingesting a mystery substance and knew nothing about research. I turned to the internet in desperation, hoping to read about the experiences of other patients who had been in trials.

    I found nothing.

    So that’s when I weighed my own risks vs. benefits in the act of sharing my precious private data, and in the end I decided the value I could bring by sharing my story via blogging my trial outweighed my need for privacy.

    What happened next was totally unexpected. As I blogged my trial, others suffering from MS and looking for any news of this ground breaking trial for what would eventually become the first ever pill form of treatment for MS (all prior treatments were injectibles), started following along.

    As I wrote about my anxieties and fears over upcoming tests and then shared what *actually* happened, others learned this research stuff wasn’t so bad… and they started joining the same trial.

    We had a conversation that started in the comments, moved to a more private yahoo group, and eventually ended up in a private group on Facebook. We shared our fears, we compared study centers, we talked about our kids… in short, we interacted on a human level — something lacking in the contact we had with our study center staff. To them we were donors of data, it was all very scientific.

    Now, the fact that patients are turning to the internet to empower themselves, share their stories and connect is just part of the evolution of the age of technology. You are not going to keep people from reaching out to one another for moral support and shared experiences.

    My blog (www.gilenyaandme.com) caught the eye of Big Pharma and I have been invited to speak about not only social media and how it impacts research, but also about how to make clinical trials more “patient-friendly”. It’s not all about lab rats and exercise wheels any more.

    So for someone to NOT understand about WHY we would share the way we do, well, they’ll never get it I guess. Some of us care more about the power of knowledge and shared information than they do about protecting the fact that they have a condition for which ignorant people might shun them.

    My philosophy on that is this: I’m thankful for a condition which might cause some to shun me. I saves me time from weeding them out as potential friends. Ain’t nobody got time for that.

    • Amanda Nichols

      Jeri, with my own MS diagnosis, I found it hard to find people who were living a life similar to mine while living with MS. I write about my experiences and worries, if only to get them out and help someone else feel less alone. I’ve learned lots from reading the blogs of people on experimental medications such as yourself.
      I agree with you on the weeding out- it truly is amazing how it helps lower the excess drama!

  • I Dominguez-Urban

    It seems to me that Keller’s real complaint is not that Adams blogs too much but that she is blogging on her “warrior” approach to cancer:

    “Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”

    He cites another individual who “cringes at the combat metaphor, because it suggests that those who
    choose not to spend their final days in battle, using every weapon in
    the high-tech medical arsenal, lack character or willpower.”

    I haven’t read Adams’ posts, but he doesn’t point to anything she has written that suggests his father in law’s approach was a “failure.” He only complains that blogging about her approach is an indictment of those who choose palliative care. He seems unable to comprehend that the two situations are entirely different outside of the diagnosis of cancer. Lisa is a 37 year-old mother of three young children. When his father in law died in 2012 he would have been at least in his 70′s ( based on assumptions about Keller’s own age). His children were grown. At least one daughter is married — to an op-ed columnist for the NYT. Keller’s F-I-L lived a full life and was at or near the end of his lifespan without cancer.

    The only difference he notes is the location of the patients. His F-I-L was treated in England while Adams is being treated in the US. Keller writes that Adams has said her children are an important reason for her choice. However, he doesn’t seem to recognize that either choice can be the right choice and that which the patient chooses may have more to do with their circumstances than with any disdain for palliative care.

    There’s no doubt that palliative care is an important option for the terminally ill and that it has an uphill climb as a valid option in the US. There’s no doubt that we spend too much energy and money extending the quantity of life without considering quality of life. However, quality of life is a subjective factor and it is up to each individual patient to balance the quantity and quality factors.

    Keller also contradicts himself in his implication that the warrior approach is incorrectly followed too often in that he laments the lack of cancer patients who sign up for trials for new drugs.Yet he noted that “Most trials of new drugs aim to determine safety and calibrate dosages,
    and make no promise of slowing the disease in the participants.” It’s no wonder more patients don’t sign up. It’s cancer specialists who promote these trials by obfuscating the patient’s likely outcome and who are making money because of our willingness to extend life.

    In the end, what is the take away point of Keller’s piece. I can’t tell from Keller’s piece whether he wants more cancer research, which is by definition aggressive treatment, or whether he wants greater acceptance of palliative care. What is clear is that he’s concerned that his F-I-L’s approach might be seen as a failure because of Adams’ blog. Me thinks the gentleman doth protest too much.

  • Colin Hung

    Excellent piece Pam. The work that Lisa Gualtieri and you have done to bring attention to this phenomenon has helped to “tip” this from niche to more mainstream. As a late-comer to social media I’m constantly fascinated and encouraged by the depth of sharing that happens. It’s a testament to +ve human nature that we share knowledge, emotions and cries for help so freely via social media. It’s a shame that some see it negatively. Thank you for writing such a balanced post.

  • westr

    Nicely done, Pam! The Kellers unwittingly have done a favor to the patient population by publishing their posts criticizing a vulnerable patient in such a conspicuous venue.

    For me, one operative sentence from your post includes the phrase “for many patients the process of blogging (includes microblogging too, such as Twitter; my edit) shifted their relationship with their illness”. This, of course, is totally true. Social media participation propels the patient from a position of disenfranchisement to one of empowerment.

    A second operative sentence was: “Perhaps Mr. Keller’s opinion piece is influenced by the culture of silence still surrounding cancer and other life-limiting diseases.” This raises an important question, rarely mentioned, which is when do patients desire public transparency of their illness and when do they prefer privacy instead? Health care practitioners are, of
    course, taught strict obedience to HIPAA rules of privacy on behalf of all
    patients. It’s likely that many if not most practicing physicians, along with cadres of other HCPs, are confused by the strict code of silence on behalf of patients in health care settings, on the one hand, while on the other hand patients themselves seemingly betray this honor code by participating in a multitude of different social media venues. If we were to assume for the moment, that the social environment in which the Kellers function is within spitting distance of physicians, but not patients, then the free-spirited communication by Lisa Bonchek Adams would, in fact, seem other-worldly. The Kellers may reside in a universe parallel to one they never new existed, and the outcry by patient advocates provided the first intersection between two parallel universes. (Confession: This is sheer speculation, as I do not
    personally know the Kellers.)

    I’m not attempting to justify the Kellers’ original position. But, there is still sufficient room for confusion deriving from patient participation in social media in a HIPAA-protected world. This brings me to a third operative
    sentence, one that includes the phrase “the ability to share one’s narrative is powerful medicine.” So powerful, in fact, that more often than not its efficacy supersedes many of the most valuable meds a patient takes
    for his/her illness. There are at least two distinct ways in which such efficacy is derived. The commonly heard one involves patient
    participation in a sharing network of other patients having a similar diagnosis. Another means in which efficacy is achieved,
    however, less-often voiced, is by patients informing the “well” of a different
    reality of their illness, and from a position not only of safety (provided by
    the patient community) but also of power (based, at least in part, on the psychological principle of power in numbers). The latter measure undoubtedly creates tension between those living within separate but parallel universes of health care. Patient empowerment is a
    savior to patients, but a potential thorn in the flesh to the power structure
    of the current medical establishment. And this could explain not only the seemingly disparaging view originally delivered by the Kellers, but also the severity of outcry on behalf of Lisa Bonchek Adam’s by the patient community at large.

  • Mrs. Levin

    Thank you, Pam, for a thoughtful, well written piece. If the public discussion of social media, blogging, tweeting, empowers the patient and allows them to be a part of the “healthy” world, then who gives anyone the power to judge?! It is well researched and documented that empowerment can provide a healthier state of mind. A healthier state of mind can do wonders for the body. As Bernie Siegel said, “There is no such thing as false hope. Just false No hope”.

    • Chimerakc

      While its proven that ones positive mental approach, part of which comes from sharing ones situation, to diseases like cancer only helps,

      as I found, most patients in the workforce face an excruciating decision about privacy and discrimination in the workplace. Despite laws protecting the disabled there is little reason not to believe,as was the case when I was diagnosed, that cancer patients still lose their jobs at five times the rate of others. And when trying to get a job back, you are so often labelled “damaged goods” whether or not its true. I am excited to see more patients going public, as it offers more strength and sustenance through ones battle, even though they sacrifice privacy.

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