08/21/2013 05:45 pm ET Updated Oct 21, 2013

Cyberbullies and Grief

RIP Trolling -- Grieving in the age of cyber-bullies can turn private grief into a public hell.

Facebook, Twitter, Instagram... social media communities now join our friends, family, faith communities and neighbors when we grieve. That experience can be a compassionate lifeline. As we saw recently with NPR's Scott Simon tweeting the last days of his mother's life, the digital world can offer a cathartic outlet for sharing one of the most lonely and heart-wrenching of journeys while facilitating local as well global support. In fact, almost three-quarters of caregivers have gone online for health information and support, and with the rise of grief websites, including Facebook Memorial pages, mourning is shaped for good or ill by our digital communities.

On the negative side, a recent Chicago Tribune article draws attention to a disturbing underbelly to grieving on-line. A new form of cyber-bullying has appeared called RIP trolling when anonymous Internet users post offensive comments on Facebook profiles and other digital sites related to the deceased. RIP trolls claim that they are mocking "grief tourism," which they define as saccharine outpourings of grief. Yet to those who experience this kind of trolling it inspires disgust and deep sadness.

A version of RIP trolling happened last year after the death of Pastor Rick Warren's son. He writes,

"Grieving is hard. Grieving as public figures, harder. Grieving while haters celebrate your pain, hardest."

Many celebrities and public figures have PR staff to help protect them from insensitive and abusive online comments, but who will help the common online user, like the Kocher family?

"As they prepared to bury their 15-year-old son, John and Kathleen Kocher received a call from a nephew warning them not to go on the Internet. A Facebook memorial page dedicated to Matthew Kocher, who drowned July 27 in Lake Michigan, had attracted a group of Internet vandals who mocked the Tinley Park couple's only child, posting photos of people drowning with taunting comments superimposed over the images."

While many new options in digital estate planning help us catalogue and bequeath online data and passwords, these plans will not fully protect our legacy or our grieving loves ones from bullying. We need a digital proxy. We need someone who will run interference for us online, separating out the meaningful expressions of support and grief from the offensive and hurtful comments. Through a digital proxy, we can make digital grieving a private place for mourning and communal remembrance in the public world of the internet.

Assigning a proxy during high stress situations like after a death is nothing new. Many families find that a relative or friend will step in to help organize meals or to field phone calls concerning funeral arrangements. Some families will even ask a neighbor to stay at the house during a funeral service to deter robberies.

And like those proxies, most digital proxies arise informally. For example, in a recent study on GenX caregiving and grief conducted by co-author Ziettlow, one grieving daughter, Courtney, found that logging into her social media accounts and seeing her mother referred to in the past tense overwhelmed her. None of the comments were malicious, but she felt fragile and unprepared emotionally to accept her mother's death. She wanted to scream to her well-meaning friends, "I am not ready for my mother to be a 'was' yet!" She needed a digital proxy to shield her from this additional stress so that she could process her loss at her own pace. For several weeks, Courtney turned off her phone and asked her best friend to become her family's digital proxy who mediated messages from and to the family.

Courtney's digital proxy did not need to "scrub" any abusive or insensitive comments or request that a guest be blocked from the on-line obituary guest book, unlike the family of Chelsea King who realized the need for a digital proxy after being bullied. When Chelsea went missing, her family created a social media page to help find her. When people began making jokes and posting rude comments, they assigned a volunteer spokesperson who coordinated a team of around-the-clock digital proxies who helped monitor the family's Facebook page. They learned to be "very aggressive about keeping the page dignified and protecting Chelsea's family... [and] given that the page grew to more than 100,000 followers, it was a huge job."

Both Courtney and Chelsea King's family benefited from a digital proxy but had not planned for one until they were in the middle of a crisis. Formally naming someone to serve in this role during an illness or immediately after a death could spare our immediate loved ones potential pain and sorrow. While a grieving community may not be able to enforce online etiquette rules, a digital proxy can serve as a buffer.

The first step of choosing someone to act as a digital proxy takes some thought. The individual should be someone trusted by the family but distant enough to emotionally weather reading potentially abusive and thoughtless comments. And, not only must the individual feel comfortable in this role, the proxy must also have some digital savvy. For example, the proxy can coordinate offers of help using an online service.

The second step is deciding how the digital proxy can help; the proxy might monitor existing sites or help develop new ones, consistent with the terms of service for the account. For example, the Kocher family eventually created a memorial page with moderated users so that only those approved could post comments and messages. This solution helps protect the grieving family while allowing for love and support to be offered.

"Old friends have been sending Kathleen Kocher messages and posting photos of her son. The Kochers were touched by the outpouring of support on the new Facebook group.
"That made me smile," Kathleen Kocher said. "I'm thankful to be able to see those pictures."

Living in a digital age where the line between public and private, real and virtual, continues to blur and shift, planning for our digital presence moves beyond bequeathing passwords to protecting our digital story. Our life's legacy lives on in the comments and pictures shared about us after death, making protecting that story and those who find solace in it all the more critical.

Who will be your digital proxy?

For more on digital estate planning, grief and loss, follow Amy Ziettlow or Naomi Chan on Twitter.

Naomi Cahn is the author of The New Kinship