You Know Who Your Friends Are When Your Sick
This Life
Whom Do You Tell When Y'all're Sick? Maybe Everyone You lot Know
Last yr, my mother, a few weeks earlier a milestone birthday, learned she needed major surgery. The circumstances were not life-threatening. She would not exist in the infirmary long. But the recovery would nevertheless exist protracted and restrict her power 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 assist, telephone a few of her friends and ask them to check in, driblet off some food, otherwise be on call. We congratulated ourselves for a well-designed programme. At that place was only one trouble.
My female parent insisted we not tell a soul.
"I don't want to inconvenience my friends," she said. "As well, I don't desire people to experience sorry for me, and I absolutely don't want to listen to all their medical stories. It'due south but so wearying."
How people decide whether to go public with their medical weather condition has long been highly sensitive and deeply personal. Certain situations, like broken limbs and cancers that require chemotherapy, are nearly impossible to proceed secret. Others, like H.I.5. and mental illness, are easier to keep under wraps, at least for a time. Older people, in my experience, lean more than toward secrecy; younger toward disclosure.
These days, all of the sometime rules have been thrown out. With more than and more people used to sharing even the most infinitesimal details of their daily lives on social media, centuries of customs have been upended. If you mail photos of yourself emptying your cat litter, filing your taxes or getting your cavity filled, you can't as hands come out afterwards and say, "Oh, I've had muscular dystrophy all these years and didn't want to tell you."
Or can you? My male parent kept his Parkinson's tranquillity from even shut friends for nearly a decade. "I was in concern," he said. "I was edifice things and borrowing coin. I didn't desire to be considered a risk." (Both of them approved my writing this here.)
And so in our time of radical disclosure, how should patients evaluate the risks and benefits of sharing medical data?
Yous might save your life. Paul Wicks is a neuropsychologist and A.Fifty.S. specialist who at present serves every bit a vice president of the online back up network Patients Similar Me. His research shows that patients are about open up with their family and current friends, least open with neighbors and childhood friends. Work colleagues rank in the eye. Multiple sclerosis, A.L.S. and epilepsy rank highest on conditions people disclose; fibromyalgia, mood disorders and H.I.V. rank everyman.
"With something like H.I.V., there are very articulate issues nigh cultural reactions and risk of infection," he said. "But something like organ transplants are the opposite. If you demand a kidney transplant, trust me, everyone will take to know. Finding a match is near impossible."
With these qualifications, Dr. Wicks comes down strongly in favor of disclosure. His reason: Yous never know where yous can learn something that might save your life.
As a researcher, he said, "I used to give patients nuggets of wisdom." Just he added, "I tin't meet every patient."
When patients seek out others with like illnesses, their noesis grows exponentially. "It's more scalable, less serendipitous," he said.
Fifty-fifty my mother, when she broke down and divulged her functioning to a friend, who happened to have the aforementioned condition, radically changed her course of handling.
Dr. Wicks's enquiry shows that patients who participate in peer groups have learned tips well-nigh drug sequencing or fiddling-known specialists that proved critical to their intendance.
"The value of a tweet-length piece of data can exist the difference between life and expiry," he said.
Proceed calm and lurk. Stefania Vicaria is a sociologist at the Academy of Leicester in United kingdom who has studied the event of social media on medicine. A chief thing people proceeds from going public is a sense of comfort in connecting with others, she told me.
"The first matter people get on social media is emotional support," she said. "But information technology chop-chop shifts to medical information equally the patients go onto specialized websites and go more than proficient in treatments, scientific trials and then on."
Most people are comfy sharing their names in disease-specific forums, she said, even if those forums are on Facebook, where membership in such a grouping can be visible to their friends. The information in these discussions is so valuable that if you however adopt 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 tin just lurk in these forums and all the same get much of the do good."
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 well-nigh their medical atmospheric condition, it was harder for young people to go along tranquility.
"If anything, young people are likely to overshare," she said. "Y'all've been living your life in public all these years, and suddenly y'all have this matter yous may not desire to talk almost. Nevertheless posting virtually that scoop of ice cream you just had feels impaired. 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 exist changed after.
"In one case you put things on Facebook or Twitter, it's out there forever," she said. "You may want to share things now, simply sometime downwardly the road, are you going to want those pictures of you with your scars in public?"
In her example, she wanted those things out in that location 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 anybody 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 officeholder — in my instance, my blood 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 take to set clear parameters about what that person is immune to say, share or mail service in public.
"I don't think you lot should have any hesitation in telling that person: 'Hey, can you delight take that photo down? I'g not ready to go public most that attribute of my condition.'" Her one house 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 lot open upward near your status, you don't merely receive information," Dr. Wicks said, "y'all also beginning sharing your ain information with others. Yous 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 besides much; or don't tell simply stalk the web for tips among people who practice tell. In other words, the best professional advice on this issue is about exactly the same equally the all-time professional advice on other medical matters: Any you do, practice it in moderation.
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Source: https://www.nytimes.com/2017/03/04/style/health-sick-illness-medical-conditions-social-media.html
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