After her breast cancer diagnosis in December, Ederlen Casillas of Downey found herself overcome by more than just her cancer treatments.
“Trying to communicate with family and friends was starting to feel overwhelming,” she says. “It’s an emotional topic, and discussing it repeatedly can be exhausting. Sometimes you really can’t communicate as clearly as you want to.”
At her cousin’s suggestion, Casillas set up a Web page with Caring Bridge, a nonprofit organization that provides free websites for people facing a serious illness. The page allows her to share information, photos, links and updates with people she has authorized to access it.
As electronic forms of communication such as personalized Web pages, e-mail, Facebook, Twitter and blogs have gone mainstream, more and more people are using them to share medical news and updates. When the news is especially shocking or difficult, electronic communication may give the deliverer relief from the emotionally fraught task of telling the story over and over.
And sharing news this way can be a fast and efficient way to mobilize support.
“It gets the word out quickly and lets people know why you’re out of pocket,” says Lisa Gualtieri, an adjunct professor in the health communication program at Tufts University School of Medicine. She and her colleagues recently conducted a survey-based study examining how patients with chronic disease use blogs to document their journey.
But these same forums can be a double-edged sword for recipients, who, though grateful for the information, may be unsure of the appropriate way to respond.
But there no hard and fast rules on either end.
Givers of information
“It’s been a great coping mechanism for me. It’s very therapeutic,” says Casillas. “I feel empowered, because it gives me a sense of control. I have an avenue to explain what’s going on.”
In addition to a narrative about her diagnosis and updates on her treatments, Casillas includes links to accurate information about her cancer and treatment so that people don’t go searching the Internet and turning up information that might not be relevant.
Developing that sense of control can be crucial, Gualtieri says, especially at a time when patients feel out of control of their bodies.
Electronic communication also gives people the chance to craft their message, carefully thinking through how they want to say it, she adds.
Online forums can empower loved ones too.
WhatFriendsDo.com allows caretakers or friends to coordinate efforts to help someone in a health crisis. “We’re a ‘take action site,’ ” says founder Aimee Kandrac.
Lee Dworshak used the site to organize support for his friend Marty Anderson, a Lomita resident who had just lost his legs and needed help adjusting to a wheelchair.
“This website was the perfect answer,” Dworshak says. “It allows you to do everything — gather a support team together, send out updates, schedule rides for him, coordinate help.”
WhatFriendsDo.com also provides the option of linking to a PayPal account to accept online donations for the person in need, and Dworshak was able to raise about $3,400 to buy Anderson a computer, pay some rent and cover other expenses.
Getters of information
Electronic forms of communication obviously benefit those on the receiving end as well.
“During a long illness, friends and family want information and don’t want to intrude,” says Sherry Turkle, a sociologist at MIT. A blog, Web page or Facebook update can provide a place for friends and acquaintances to get information in a respectful way.
“When someone is diagnosed with a serious illness, the number of times people contact them actually drops in half, because no one wants to bother them,” says Caring Bridge founder Sona Mehring. That’s where sites like hers can help, creating a flow of information and providing a chance for people who might not feel comfortable making a personal phone call or visit to express their support in a non-intrusive way.
When Mehring began Caring Bridge in 1997, “some people said that this is cold, hard technology that will make things more impersonal, but actually it’s just the opposite — it strengthens relationships because people can offer support more often without worrying that they’re a bother. We’ve found that it actually increases visits and cards and phone calls.”
That’s certainly been the case for Casillas, who says that the site has strengthened her support network. She takes comfort in the uplifting messages and photos that visitors have left on her Caring Bridge guestbook.
Online forums sometimes give the person in crisis an emotional outlet, says Susan Fletcher, a psychologist in Plano, Texas, and an expert in social media.
“We’ve all e-mailed someone information that we might be too timid to say in person,” she says. “People feel less vulnerable when communicating in writing than they might in a face-to-face conversation.”
The gray area
Yet for those on the receiving end of online updates, the impersonal nature of electronic delivery can feel awkward. For them, the rules of etiquette remain murky.
Not too long ago, Traci Brown received bad news via an ambiguous Facebook update from an old friend. “It said something like, ‘You never know what God has intended for you,’ and then people started posting these really generic replies like, ‘Have faith that you’re going to make it through this,’ ” says Brown, a professional speaker from Boulder, Colo.
She had known that her friend and his wife were expecting a baby, but she wasn’t in close contact with them. “Eventually I pieced it together that their baby must have died shortly after it was born, but I didn’t want to come right out and ask, because then I’m being nosy,” Brown says. “But at the same time, they’re the ones who put it on Facebook.”
In cases like these, the recipient must simply accept the information they’re given, especially if it’s about a death or a serious diagnosis, without asking probing questions, Fletcher says.
For instance, if someone posts a Facebook update about the death of a loved one, it’s perfectly appropriate to voice support but not to ask how the person died. “Somebody will post only what she wants people to know. You have to accept the limits of that information and look the other way,” she says.
The nature of the relationship, not the method by which the news is received, should determine the response, says Roxane Cohen Silver, a psychologist at UC Irvine.
When it’s a close friend, you still call and send flowers or stop by with a meal, regardless of whether you heard news via e-mail or Facebook, Silver says. If it’s a distant acquaintance, an e-mail or online note might suffice.
As for bad news
The same rules hold for distributing bad news, Silver says. When Zak Kirchner’s mother died of cancer in January, he announced her death via a tweet that updated his Facebook status, but first he personally called close friends and relatives to make sure none of them heard the news online first.
“The calls were difficult to make, and I was glad that I didn’t have to relive it 50 times,” he says. Though he still occasionally tweets about his mother’s death, he recognizes the limits of Twitter. His mother was an art dealer, and “it would take more than 140 characters to explain why going to an art gallery is too difficult for me right now.”
Michelle Moore learned of her aunt’s death via a Facebook update one of her cousins posted just minutes after her aunt took her last breath. Moore, a communications professional in Columbus, Ohio, had known that her aunt was in the end stages of a terminal illness but says bluntly: “Facebook was a horrible and impersonal way to learn about something so devastating.”
But she says she felt grateful for the information when she learned about the death of an old high school classmate via a mutual friend’s Facebook update. “If you’re not close to the person, you can take it in as horrible tragic news about someone you knew. But if it’s someone close to you, that’s not news — it’s your life.”
She adds: “The degree of closeness matters.”
Electronic communication should never replace traditional forms of support, Fletcher says. “It should be in addition to, not instead of, human contact.”
Adds Silver: Sending well-wishes or condolences through Facebook or e-mail is the electronic equivalent of sending a card. “A close friend or relative is not going to use posting on a Facebook instead of bringing the casserole.”