Who do you tell when you’re sick?

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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.

TWEET DE­FEN­SIVELY

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.

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