THE BLOG
01/29/2014 04:24 pm ET Updated Mar 31, 2014

Dying to Be Heard

If you were diagnosed with a serious illness, would you hide it from your friends, share it with a small select group, or tell the world?

There was a time when patients kept the details of their illness to themselves and their family, but recently we've seen a proliferation of blogs documenting the experience of living under a potential death sentence.

Social media has made it easier to share the details of this day-to-day struggle, but the motivation to do this in the first place taps into a very old and deep emotional need.

People diagnosed with progressive chronic illness face two basic choices: They can conclude that their life is over and retreat into a shell of detachment from the world of the healthy, or they can choose to stay connected to their pre-illness existence by sharing their experiences.

Those who choose isolation may be missing a profound area of support. Blogging creates community. Suddenly strangers become a new circle of friends, sharing their experiences, and rooting for you. As Pamela Katz Ressler put it in her recent post in Cognoscenti, "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."

One of my professional chaplain colleagues at HealthCare Chaplaincy Network has observed:

Why share the intimate details of illness with a wide audience? Partly because serious illness is isolating. When we're seriously ill we live separate and apart. We observe the bustling of the quotidian world, the goings to and fro, but we occupy space outside that world. We stand alone, in what might as well be a separate country.

In Illness as Metaphor, Susan Sontag wrote

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. We communicate to bridge the chasm. Every blog post is another stamp on our passport.

I believe in the transformative power of storytelling, which has cathartic value for the teller. When someone is present to hear that story a connection is made. The question is whether that connection can be made via "impersonal" media like Twitter, or whether one needs a real human sitting with you. Ironically, in our fragmented age, social media seems able to bridge distance and bring a community to the sufferer, wherever they may be.

Because of the interactive nature of the blogosphere, readers and bloggers often feel a sense of connectedness, becoming more than strangers. Referring to the feedback that she had been getting, one blogger who wrote about her mother's illness noted that, "One of the best parts of blogging was the comments people left. Even though we had never met any of them, we felt like we had a little community rallying around us."

While many patients detail their experiences in order to stay connected, some blog for convenience and immediacy. Rather than having to muster the energy to call every single friend and family member, they simply update the blog, link to it on Facebook, and call it a day. Their friends read the update, and often will send texts or emails immediately, so they get messages of support with minimal effort.

Whatever the reason for blogging, as more and more Boomers move into the years where illness is more likely to strike, we're going to be reading many more profoundly personal and deeply moving experiences about the fight for life.