I’m about to overshare on sharing.
I have good reason. In 2014, my wife Dee Dee was diagnosed with breast cancer. Among the many hard decisions we had to make was how, and when, to communicate the sensitive news in a culture overrun with social media oversharing.
Spoiler alert: She’s doing quite well. Tiny tumor, lumpectomy, chemo avoided, radiation completed, and then several years of tamoxifen hormone therapy. Aside from the initial shock and the deeply unnerving, continuing unknowns, the most troublesome side effect was radiation-induced sunburn in areas normally covered by clothing. Especially to a redhead whose fair skin tends to be smothered in sunscreen.
We also discovered that social media can be simultaneously an ally and enemy, and there are ways to tip the balance in one’s favor while avoiding the pitfalls.
Create a sharing framework
At the time of the diagnosis, Dee Dee and I were active on Facebook, Twitter, LinkedIn and blogs. Friends, family and acquaintances were used to getting personal updates and obligatory cat photos en masse. We realized we couldn’t cut off the communication channels (rumor so loves a vacuum) but we should manage them.
So before sharing any difficult medical news, you might start by answering seven questions we developed:
- Who needs to know?
- How much do they need to know?
- Will the news and any updates worry them or comfort them?
- What’s the best way to let them know?
- Who will create the updates to be shared?
- Will you care if the information is shared further?
- How much more information are you willing to share if someone contacts you directly?
Put it into practice
Our answer to the first question meant silence wasn’t an option. “I knew there were people on Facebook who would care and would want to know, and they were people I didn’t have direct contact with often,” Dee Dee explains. “I also felt that breast cancer was a momentous enough event in my life that saying nothing felt strange and somewhat dishonest.”
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But tone, it turned out, was critical in addressing the second and third questions. Staying both positive – and truthful – were clear directions. “I didn’t want to freak out my friends, and frankly I was trying to be positive for my own sake,” she notes.
Because this was Dee Dee’s news and only peripherally mine, we stayed focused on Facebook as the best communications channel – that’s where her contacts congregated. Unlike Twitter, blogs or some other social media networks, there was some slight ability to control who saw the updates.
Neither of us were naïve, either, both realizing that once something was posted, all it took was a clicked “Share” or cut-and-paste to make it public.
As a result, Dee Dee says, “I decided to share what I thought was the most important information: diagnosis, treatment plans, how each treatment step went and how I felt afterwards, and important decision points or results. Do I need chemo? How long would radiation last? What would be the side effects?” Always, if possible, with an optimistic spin.
We also created something of a communications hierarchy, adding an email group for two dozen family and close friends who needed more frequent or detailed updates.
Oh. And an over-communicative husband (me) wound up as what Dee Dee describes as her “primary spokesperson.” I drafted email updates for her approval when she was fatigued or quietly upset. Having a second party to help with the communication task saved her the effort and “gave him a very useful role that he was very good at.” (Really. She said that.)
Learn lessons – and consider cautions
In our case, the reactions were relief – on both sides. Ten Facebook updates were shared over three months, mostly from Dee Dee’s profile, and many more group emails were sent. Responses, Dee Dee notes, were uniformly supportive and, “Some people shared their own breast cancer stories, or those of friends and family, and those kinds of success stories were very encouraging to me.”
Not just that, but only having to tell the basic story once via social media and group email was easier, emotionally, than the “difficult and exhausting” process of many, many phone calls. That energy was saved for any personal follow up.
However, don’t forego all direct human contact.
On a broader scale, Katie McCarthy, who at the time was Group Health Cooperative’s social media manager and later became chief of staff at Washington Permanente Medical Group, sees how medical conditions are shared socially. She has seen it done well. And, apparently, very poorly, leading to advice that might be summed up as three “don’ts.”
Don’t ignore the phone or face time. Before composing that first social media post, inform those closest to you of the news you will be sharing. McCarthy says think about, “Who should I let know before I let the world know?” (McCarthy herself has some experience with this, finding out only on social media about a close relative’s medical situation. Dee Dee called siblings and her best friend first.)
Don’t suddenly go dark. Once you start posting, be consistent in continuing to post. You don’t have to be on a schedule for those you’re keeping informed, but McCarthy says “if you stop doing updates, they’re going to get more concerned.”
Don’t unexpectedly be weird. “Think about when you’re going to post,” McCarthy advises, and that doesn’t mean time of day. She cites the case of one person, having undergone brain surgery, whose posts took a worrying turn in tone and details. The patient, friends discovered, was on prescribed heavy narcotics – and was posting after taking them.
Despite any comfort you might have with social media, realize it’s also not the best place to solicit personalized medical advice. Particularly in public. “I tend to see it when we post something on cancer care, for example,” McCarthy says. Patients “seem to come out of the woodwork” to talk about treatments and questions; “people will even tweet about their colonoscopies and tag us in it.”
Yet when it comes to conveying difficult medical news, social media can be constructively managed. You may not be able to control how what you post spreads, but you do control what you say and when and where you say it – even if it’s simply sharing one’s experience, and advice to others, in this column.
Frank’s story originally appeared on GeekWire, where he’s a regular contributor.Whizzco