If You Are Really Sick, Would You Really Tell?

Last year, my mother, a few weeks before a milestone birthday, learned she needed major surgery. The circumstances were not life-threatening. She would not be in the hospital long. But the recovery would still be protracted and restrict her ability to care for my father, who has Parkinson’s.

No worries. Her three grown children, all of whom live in distant cities, snapped into action. We would fly in for the surgery, call in extra help, telephone a few of her friends and ask them to check in, drop off some food, otherwise be on call.

We congratulated ourselves for a well-designed plan. There was only one problem.

My mother insisted we not tell a soul.

“I don’t want to inconvenience my friends,” she said. “Also, I don’t want people to feel sorry for me, and I absolutely don’t want to listen to all their medical stories. It’s just so wearying.”

How people decide whether to go public with their medical conditions has long been highly sensitive and deeply personal.

Certain situations, like broken limbs and cancers that require chemotherapy, are virtually impossible to keep secret.

Others, like H.I.V. and mental illness, are easier to keep under wraps, at least for a time. Older people, in my experience, lean more toward secrecy; younger toward disclosure.

These days, all of the old rules have been thrown out. With more and more people used to sharing even the most minute details of their daily lives on social media, centuries of customs have been upended.

If you post photos of yourself emptying your cat litter, filing your taxes or getting your cavity filled, you can’t as easily come out later and say, “Oh, I’ve had muscular dystrophy all these years and didn’t want to tell you.”

Or can you?

My father kept his Parkinson’s quiet from even close friends for nearly a decade. “I was in business,” he said. “I was building things and borrowing money. I didn’t want to be considered a risk.” (Both of them approved my writing this here.)

So in our time of radical disclosure, how should patients evaluate the risks and benefits of sharing medical information?

You might save your life. 

Paul Wicks is a neuroscientist and A.L.S. specialist who now serves as a vice president of the online support network Patients Like Me. His research shows that patients are most open with their family and current friends, least open with neighbors and childhood friends. Work colleagues rank in the middle. Multiple sclerosis, A.L.S. and epilepsy rank highest on conditions people disclose; fibromyalgia, mood disorders and H.I.V. rank lowest.

“With something like H.I.V., there are very clear issues about cultural reactions and risk of infection,” he said. “But something like organ transplants are the opposite. If you need a kidney transplant, trust me, everyone will have to know. Finding a match is nearly impossible.”

With these qualifications, Dr. Wicks comes down strongly in favor of disclosure. His reason: You never know where you can learn something that might save your life.

“As a doctor, I used to give patients nuggets of wisdom,” he said, adding, “But I can’t meet every patient.”

When patients seek out others with similar illnesses, their knowledge grows exponentially. “It’s more scalable, less serendipitous,” he said.

Even my mother, when she broke down and divulged her operation to a friend, who happened to have the same condition, radically changed her course of treatment.

Dr. Wicks’s research shows that patients who participate in peer groups have learned 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.

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 specialized 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.

Dr. Wicks called this lurking. “The ratio of people who contribute to Wikipedia versus people who use Wikipedia is quite tiny,” he said. “You can just lurk in these forums and still get much of the benefit.”

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 pediatric cancer survivor who has devoted her career to helping young adults with cancer. Now the chief patient advocate at Rx4good, Ms. 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.”

Ms. 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, Ms. 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 learned 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,” Dr. 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.

Source:     NYTimes