Who do you tell when you’re sick?
happened to have the same condition, radically changed her course of treatment.
Wicks’ research shows that patients who participate in peer groups have learnt tips about drug sequencing or little-known specialists that proved critical to their care. “The value of a tweet-length piece of information can be the difference between life and death,” he said.
I don’t think you should have any hesitation in telling that person: ‘Hey, can you please take that photo down? I’m not ready to go public about that aspect of my condition.
KEEP CALM AND LURK
Stefania Vicaria is a sociologist at the University of Leicester in Britain who has studied the effect of social media on medicine. A primary thing people gain from going public is a sense of comfort in connecting with others, she told me.
“The first thing people get on social media is emotional support,” she said. “But it quickly shifts to medical information as the patients go onto specialised websites and become more expert in treatments, scientific trials and so on.”
Most people are comfortable sharing their names in disease-specific forums, she said, even if those forums are on Facebook, where membership in such a group can be visible to their friends. The information in these discussions is so valuable that if you still prefer anonymity, you should join under a pseudonym.
Wicks called this lurking. “You can just lurk in these forums and still get much of the benefit,” he said.
For those who choose to share their conditions with their wider social networks, there is reason to be cautious. Heidi Adams is a paediatric cancer survivor who has devoted her career to helping young adults with cancer. Now the chief patient advocate at Rx4good, Adams said that while it was harder for older people to share information about their medical conditions, it was harder for young people to keep quiet.
“If anything, young people are likely to overshare,” she said. “You’ve been living your life in public all these years and suddenly you have this thing you may not want to talk about. Yet posting about that scoop of ice-cream you just had feels dumb. There’s a lot of pressure.”
Adams recommends beginning conservatively, restricting the most intimate information to the most limited outlets, like a blog or a CaringBridge site, whose privacy settings can be changed later.
“Once you put things on Facebook or Twitter, it’s out there forever,” she said. “You may want to share things now, but sometime down the road, are you going to want those pictures of you with your scars in public?”
In her case, she wanted those things out there at the time of her treatment, she said, but as she moves further away from it, she has changed her mind.
CONTROL YOUR SURROGATES
When I got a cancer diagnosis nine years ago, I made a critical misstep in disclosure in my early days. I told everyone the date of my biopsy. That meant when that day came, I got way more calls than I could handle. From that day forward, I appointed a chief information officer — in my case, my brother — whose job it was to keep everyone informed.
While designating such a figure can be helpful, Adams said, today it’s not sufficient. Patients have to set clear parameters about what that person is allowed to say, share or post in public.
“I don’t think you should have any hesitation in telling that person: ‘Hey, can you please take that photo down? I’m not ready to go public about that aspect of my condition.’”
Her one firm rule: “Don’t let people post pictures of you in the operating room.”
VICTIM NO MORE
The most surprising thing I learnt about this issue is that going public has one unexpected side effect: It gives patients a sense of control over their lives at a time of often intense helplessness.
“When you open up about your condition, you don’t just receive information,” Wicks said, “you also start sharing your own information with others. You get to be the helper sometimes, and helping people makes you feel really good.”
Ultimately, what I had thought of as a black-and-white decision — tell or don’t tell — is now much more nuanced: tell or don’t tell; tell but not too much; or don’t tell but stalk the web for tips among people who do tell.
In other words, the best professional advice on this issue is almost exactly the same as the best professional advice on other medical matters: Whatever you do, do it in moderation.