Chronic Sufferers Share Online, but Are They Getting Help?

Are you are among the estimated 90 million Americans–25% of the population–who has one or more chronic diseases–or are you taking care of someone who has an ongoing health issue?   If you’ve gone online to access health information, connect with fellow sufferers, or share your experiences, you’re not alone.

A new report by Susannah Fox, released today by the Pew Internet Project in collaboration with the California Health Care Foundation, “The Social Life of Health Information, 2010,” found that 59% of American adults look on line for health information.   A smaller percentage — 34% of internet users, or 25% of adults —  have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.

Health-related social ties generally fall into the realm of consequential strangers: doctors and other medical personnel, patients, and caregivers who are enlisted as part of the sufferer’s social convoy–the entourage of people who travel through the experience with him or her.    Although our social convoys of course include our intimates, they might not be in the best position to help us.  They’re traumatized, too.  Also, they usually don’t have a map of the territory.

While the vast majority of our illness-associated connections offer actual hand-holding and face-to-face sharing, the Internet allows use to forge these kinds of ties  online as well.  As Pew concludes:

The social life of health information is robust. The online conversation about health is being driven forward by two forces: 1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.

We are honored that the Pew report quoted Consequential Strangers (see page 7 of the PDF, or this online link): “If people who are already on board don’t have the information, experience, or empathy you need, you enlist others who do.” (from Chapter 4, Good for What Ails Us)

In a pattern that matches this observation, people living with one or more chronic conditions and those living with disability are significantly more likely than other social network site users to gather health information on these sites.

The problem is, that people you “meet” on the Internet are total strangers.  Unlike striking up a conversation in a doctor’s waiting room or meeting at a support group,  it’s a little trickier to go from stranger to consequential stranger with someone you can’t see. Some common-sense guidelines can help:

  • Proceed slowly with any online relationship.   Some people prefer to have Internet “conversations” anonymously until they are certain that the other person is legit.
  • Offer your own information sparingly, don’t divulge anything personal that might be used to track you down.
  • Never base treatment decisions or methods of care solely on information from the Internet.
  • Before you allow an online relationship to migrate off line, suggest a video chat. And if you do decide to see each other IRL (in real life), make sure that your first meeting–to be safe, first several meetings–take place in a public venue.
  • Remember that even sites sponsored by major health groups don’t usually screen their members. Just because someone says she has cancer, for example, doesn’t mean she actually does.  She might suffer from Munchausen’s-by-Internet–a condition in which someone fakes symptoms to garner attention online.   Dr. Marc D. Feldman, an expert in “factitious” conditions who first identified the Internet version, admits that while there are clues that someone has MIB, even he has been fooled.

Facebook: Chicken Soup for the Social Soul

The wonder of Facebook is that you can have a thought, share it, and get feedback from the most remote corners of your world, even from strangers who skirt the periphery of your world.

I think about such things every day, among other reasons because I traffic in relationships, professionally and personally.  I speak to strangers all the time. During the year, I live in five different homes (counting my same-time-next-year rental in a summer community). I need consequential strangers to live the way I do–often, far away from my most beloved family members and friends. Continue Reading »

Let’s Hear It For “Soft Skills”: Communication & Collaboration

Last Friday (March 12), at Cengage Learning‘s 2010 “Course Technology Conference,” an annual gathering of college IT teachers, I talked about the importance of  connection, engagement, communication, and relationship development in the classroom–skills that educators often consider “soft.”   The points I made are relevant to any classroom, workplace, institution, or organization.

Pay attention to the small moments. Life is an ongoing series of casual, everyday interactions that add up.   You don’t hear the sound of strings swelling in the background when something important is about to happen.  So if you don’t pay attention, you might miss moments that matter.  A brief talk in the hallway, an email from a former colleague, a Facebook response to a comment, a few minutes spent helping someone else–each conversation results in a bit of information, insight, clarity, a feeling of being connected, or a good laugh.  And the more you notice them, the more you make them happen.

Celebrate diversity. An odd by-product of political correctness is that although it supposedly eradicates offensive language related to gender, race, religion, sexuality, and the like, it can also limit the celebration of differences.  A community collage classroom, for example, is a rich font of diversity, and everyone–the taxi cab driver, the single mother, the house painter–brings something different to the table–and to each other’s lives.  Different perspectives enrich us.  That’s why the Occupation Test, has a range of jobs, up and down the socio-economic ladder.  As sociologist Bonnie Erickson, having a diverse social convoy is “like enrolling in a liberal arts college and getting a degree in a little of almost everything.”

Use relationships, not rewards, to motivate. Actually, relationships are the best reward. In the classroom, in the workplace, at home, or any setting where people are expected to cooperate and contribute, the goal is to join with instead of laud over, to position yourself at the center, rather than rule from on high.  Read this post by Howard Rheingold in which he talks about dealing with students’ divided attention in the classroom by heightening their awareness and asking them to participate with him.  Smart corporate managers take a similar approach with their workers.  For that matter, so do smart parents!  A relationally-engaged person is a partner and an ally.   (I talked about the dangers of not engaging in How GM Lost Touch With Its CS.)

Today, the ability to communicate, share, and be open to others’ ideas are essential.  To think of these as “soft skills” is dismissive.   Every decision we make, every piece of information we acquire, every insight, every project that needs completion involves interactions with others–face-to-face and/or online.  We are all in it together.

Important Note:  Howard Rheingold has developed the  Social Media Classroom and Collaboratory,  a free online resource for students and teachers.  Arguably, we all need to explore what he considers the five key “Internet literacies”: attention, participation, collaboration, network awareness, and crap detection!  It’s worth a look.

The Truth About Consequential Strangers

Consequential strangers matter. We don’t always pay attention to the cumulative effects of a warm hello, help with a package, a bit of information.  But when someone you once took for granted is no longer there–you realize how those, brief, subtle, everyday interactions add up.  Manhattan psychologist Mindy Greenstein wrote about such a realization in her must-read piece, My Building’s Protocol, Altered in a FlashContinue Reading »

After “Audacity,” Now What? My State-of-the-Blog Address

My confession about falling down the “rabbit hole” of social media–The Audacity of Hype–is this week’s “Soapbox” essay in Publisher’s Weekly.  The piece has garnered quite a few comments.  One tweeter described it as:  “Moving account of hopes/fears of writer plugging her book on social media (Consequential Strangers).”  I’ve also received several emails and Facebook messages and questions from other writers. And PW printed a letter from someone in the real estate business for whom the piece also resonated:

I thought I was a Real Estate Broker, but the last few years it’s been all about desk top publishing/marketing and advertising via social networking. Makes “hauling & hoping” not look so bad after all!

Continue Reading »

Creativity and Consequential Strangers

In the “old days,” before search engines, when you couldn’t remember the date of the first moon launch or why “the Bay of Pigs” was important (you must have been doodling instead of listening in class that day), you had to trudge off to the library.   Now, answers to just about anything are at our fingertips.  Recently, for example, my son-in-law wondered about the origins of the song “Mr. Bojangles,” and with a few clicks of his mouse came up with this information, which he promptly forwarded to me:

“Mr. Bojangles” was the nickname used by Bill Robinson, a black tap dancer who appeared in many movies in the 1930s, including with Shirley Temple in Rebecca of Sunnybrook Farm.  After Robinson’s success, many black street dancers became known as “Bojangles.”

[The song] was written and originally released by the singer/songwriter Jerry Jeff Walker, who wrote [it] in the mid-’60s and recorded it in 1968. Walker left his home in upstate New York and traveled the country playing music. He spent some time in New Orleans, where one day he was a bit tipsy and made a public display trying to convince a young lady that love at first sight was real. This landed him in jail, where his cell mate was an older black man who made a living as a street dancer and told Walker all about his life. In his book Gypsy Songman, Walker tells the story: “One of the guys in the cell jumped up and said, ‘Come on, Bojangles. Give us a little dance.’ ‘Bojangles’ wasn’t so much a name as a category of itinerant street entertainer known back as far as the previous century. The old man said, ‘Yes, Hell yes.’ He jumped up, and started clapping a rhythm, and he began to dance. I spent much of that long holiday weekend talking to the old man, hearing about the tough blows life had dealt him, telling him my own dreams.” Walker moved on to Texas, where he sat down to write: “And here it came, just sort of tumbling out, one straight shot down the length of that yellow pad. On a night when the rest of the country was listening to The Beatles, I was writing a 6/8 waltz about an old man and hope. It was a love song. In a lot of ways, Mr. Bojangles is a composite. He’s a little bit of several people I met for only moments of a passing life. He’s all those I met once and will never see again and will never forget.”

I did a little Googling of my own and apparently Walker’s cell mate was white; in those days, jail cells were segregated.  So, you can’t necessarily trust everything you find on the net.  But of course, the reason my son-in-law passed the story on to me was that the Mr. Bojangles “composite” was a conglomeration of all the consequential strangers Walker had met on the road of life.  The same was true for writer Studs Turkel who drew inspiration from casual, and sometimes fleeting, acquaintances.  (Read an excerpt about Turkel here.)

What’s going on?  How do people inspire us? Psychologist Kenneth Gergen, author of The Saturated Self and, more recently, Relational Being, explains that our minds are “populated” by everyone we encounter in life, including characters in books and people we “meet” through various media.  As any writer, artist, musician, or successful entrepreneur knows, some ideas seem to “come out of nowhere” or feel like “divine inspiration.”   Now that I’m paying attention to all the members of my social convoy, or personal entourage of connections, I’m aware of how much my own thinking is shaped every day by the relationships in my life.  In a sense, I’m practicing–and suggesting to readers–what psychologist/artist/writer Ellen Langer might call “social mindfulness.”  A description of her classic book, Mindfulness explains: “To be mindful, she notes, stressing process over outcome, allows free rein to intuition and creativity, and opening us to new information and perspectives.”

I’m hoping that social mindfulness is infectious–and it looks like it just might be:    I get emails every day from people telling me how their newfound awareness of consequential strangers is opening their hearts and minds to ideas, images, experiences, and perspectives–the very stuff of creativity.

Can Your Colleague’s Husband’s Sister Make You Fat? (How Our Social Convoys Protect Us)

We may not be judged by the company we keep, but we’re certainly influenced by it.  That theme also runs through Consequential Strangers: The Power of People Who Don’t Seem to Matter.   My collaborator, Karen Fingerman, who coined the term consequential strangers, makes the point that these people on the periphery influence our behavior as much as intimates do–and we draw from many different strands of research to explain why this is the case.  But according to the advance promotion for an upcoming book, Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives–we are also influenced by people we don’t know:

“Your colleague’s husband’s sister can make you fat, even if you don’t know her. A happy neighbor has more impact on your happiness than a happy spouse. These startling revelations of how much we truly influence one another are revealed in the studies of Drs. Christakis and Fowler, which have repeatedly made front-page news nationwide.” [Excerpt of the press release for the book]

Over the last several years, the Harvard researchers have received widespread attention for their contention that health issues “run” in social networks.  But could someone you don’t know “make” you fat?  It certainly gets our attention.  At least two researchers (“Study Contradicts Earlier Reports That Some Health Issues Are ‘Contagious’ Among Friends”) have questioned whether social networks actually cause a particular health outcome.  I’m a journalist, not a scientist, and therefore not in a position to refute Christakis’ and Fowler’s work-it is well researched and respected.  But I suspect that our two books will probably be spoken of in the same breath because we cover similar territory–the broader social landscape beyond our circles of family and close friends–albeit through a different lens.  While Consequential Strangers acknowledges that we’re all embedded in larger social systems and that those systems affect our attitudes and behavior, ours is a book about relationships, not networks.

To avoid confusion, in fact, instead of referring to a “personal network,” (which researchers define in different ways), we use the term social convoy, coined by psychologist Toni Antonucci in the early eighties to describe the caravan of the connections you forge as you move through life.  Antonucci based her work on attachment theory–the notion that babies who have protective caregivers feel secure enough to check out that shiny object across the room.  Looking at adults’ social circles, she reasoned that close ties provide similar support in adulthood, allowing us to explore and take risks.  Decades later, hers and other studies suggest that she was correct. Today, she acknowledges that all our relationships, including the people who play minor roles in our lives, help us face whatever challenges come our way.

Analyzing your social convoy helps you review your life not merely as a series of events but as a cavalcade of people.  You get to see who helped make your journey more pleasurable–and who led you towards the seedy part of town.  You can see that all the people in your entourage matter–intimates and consequential strangers.  Each one is a potential resource, even those you can barely spot in the rear view mirror.  The convoy image also captures movement and the fact that relationships are fluid.  As you change, your relationships change.  Some people in your convoy make the entire journey with you, but others–typically, your consequential strangers–are there for specific segments of the trip.

It’s important to remember, as both books point out, that larger social forces affect you–with or without your consent.  But the convoy image offers a slightly different, and more personal, perspective that enables gives you a sense of control.  Whether or not you can actually “get fat” because you are part of the same network as your colleague’s husband’s sister whom you don’t know is far less important than what you do if you feel that you’re overweight.  If you decide to go on a diet, advice and support will come from people you do know.  They’re already in your convoy.  If not, you can recruit new members into your convoy who have the information, expertise, or empathy that you need.

Sure, we are all embedded in social systems that are beyond our own convoys.  Often, we’re in more than one, simply because we happen to be part of a neighborhod, a company, an ethnic group, a generation, or some other collective identity that affects our individual journeys.  But in order to take action, to get information, to gain a new perspective, we need to look at our relationships.  In the end, it’s the people in our social convoy who help us get where we want to go.

How GM Lost Touch With Its CS…

…And How To Stop It From Happening in Your Company (Or Your Life)

General Motors went into bankruptcy because it had no respect for its consequential strangers–its employees, suppliers, customers, and colleagues in the same industry. In not so many words, that’s what the editors of The Week concluded in its Briefing, The Rise and Fall of General Motors.

“One division’s cars often cannibalized the sales of other divisions. Its in-house parts companies overcharged the various car divisions, which were barred from seeking lower prices from outsiders. And the various divisions resisted consolidating back-office operations such as purchasing and payroll.”

Acknowledging that high-cost labor contracts “crippled the company’s ability to cut costs,” the author also cites “management’s arrogance and complicity” as a factor in GM’s fall. Who could blame the average worker for feeling resentful?

Executives were literally walled off from the rest of the company behind the double electronic doors to the 14th floor of GM’s Detroit headquarters. They entered the building through a private basement garage and took their gourmet meals in private dining rooms. They rarely interacted with customers or even their own dealers, who knew firsthand their customers’ like and dislikes.

The story of GM mirrors how other ailing companies have lost touch with their consequential strangers: when employees and managers exist in two different, non fraternizing worlds, when one division doesn’t communicate with another, and when a company fails to look outside its own walls. They are insular; even consultants brought in act and think like the founders. Such companies are neither as profitable nor innovative as companies that collaborate across boundaries.

And it’s not just companies. Any group of people with a common goal–for example, a grass roots health organization or a spiritual center–can face a similar issue as it grows. It can happen to successful individuals, too. When a close-knit entourage, consisting of a few trusted friends, morphs into a branded enterprise with lawyers, handlers, trainers, accountants, and countless go-fers on the payroll, it makes it difficult for the person to connect. (See Was Michael Jackson Your Consequential Stranger?)

So what serves as preventive medicine?  How do then you stay in touch with the workers, the customers, the volunteers, the constituents, the fans who helped you grow or put you on top in the first place? Not surprisingly, the first step is to acknowledge that an assortment of consequential strangers is vital to the health of your undertaking. To stay connected, even as you grow, you have to innoculate your company against isolation:

Welcome diversity. Seek out coworkers and colleagues of a different class, race, religion, ethnic background, sexual orientation, and age. Even more important, look for people who have different ideas.  Connect with other companies.  Building such “bridges” brings in new resources and a fresh perspective. Otherwise, ideas get stale. And as the story of GM illustrates, people become unmotivated, even bitter, in an environment that squelches innovation and cooperation.

Create a climate of collaboration. The bigger an organization becomes, the greater the need for policies and procedures. But you can never lose sight of the fact that, first and foremost, you need people. And you need them–the high status and the low, the right-brained and the left-brained–to work together. One way to nurture such a climate is to think about your company as a “social convoy”– a constellation of individuals, in and outside the company, who travel with you toward a particular goal. Imagine yourself at the helm, riding in a hybrid minivan down the center of the road, flanked by a handful of your closest advisors. In the outside lanes are employees–perhaps members of the same divisions riding together–as well as suppliers, customers, and others in your industry. In a traditional corporate structure (like GM’s, which Alfred Sloan called “decentralized operations with coordinated control”), workers–if they are heard at all– have to go through appropriate channels to propose a new project or render an opinion of something already in the works. Conversely, in a social convoy cars can jockey positions. And thanks to the technology, it’s possible to communicate with all of them.

Be sincere.  Not that there’s anything wrong with profit and gain (as Seinfeld might have put it), but they can’t be your only motive. If you’re connecting with people only to better the bottom line, get more bodies into church, or convince people to buy your book, they’ll catch on. And they’ll probably desert you. As some might put it, “N.Y.P.A.”–we’re not your personal army.  So just be…yourself.  Do it over lunch, on a street corner or in a café, on the phone or over the Internet. If you’re uneasy about the new media, you might be tempted to consult with one of the so-called experts out there, whose blogs and twitters promise to teach you how. And perhaps they can help, but no one knows “the best way” (or even the five best ways) to reach out to your people.  Instead, why not spend social energy rather than money on expert advice? It might sound kind of old-school and not very flashy, but the best idea might be to just get out there, find a slice of common ground, and connect–one consequential stranger a time.

Starting Over: Casual Acquaintances Are More Important Than You Think

[This offering appeared earlier today on more.com with the headline: “It’s not just who you know; it’s the variety of people you know that opens the door to new career possibilities.]

You can’t miss Lily’s property.  It has a storybook quality: a white picket fence hugged by a row of green plants sprouting yellow small flowers that spill onto the sidewalk.  On the other side, between fence and house, is a wild profusion of pink roses, clusters of lilies, and bursts of other showy flowers whose names are unknown to me. There’s a grape arbor, a gazebo, and several little sitting areas punctuated by bricks and stone pathways.  If Lily’s in her garden, I rarely miss the chance to compliment her hard  work.  On this particular day, after a bit of small talk, I asked how much time she spends there.  Her answer—on average two hours, but sometimes as many as eight—compelled me to ask, “What do you do in real life?”

At it happens (increasingly, nowadays) 48-year-old Lily had been laid off from a staff development job in the Boston public schools (“They just had no money”).  She didn’t seem upset.  It was almost July, she explained, and now she could spend the next several months in her garden.  Besides, she already had  “a promising prospect,” a job lead that came from one of her neighbors, whose garden Lily also tends.  For example, a while back, Lily decided that the guy across the street, “ought to have a little garden.”  So she planted one for him.  In turn, when he heard about Lilly’s being laid off, he invited her over. “He just sat me down and said, ‘Don’t worry. I’m going to do everything I can to help you.’”

Lily’s story didn’t surprise me. Starting over usually involves people other than your family or close friends.  Our loved ones know what we know, whereas neighbors, coworkers, former bosses, and the guy at the corner deli connect us to information and opportunity. Call them  “consequential strangers.” Most of us have a wealth of these “weak ties,” as sociologists call them– unremarkable relationships that we tend to take for granted or, at best, undervalue.  And no wonder: Most relationship gurus focus on partners, parents, and children.  So why would you give a second thought to that pleasant conversation when Sam at the dry cleaners noticed your new hair cut or the delightful discovery that your child’s teacher is related to your dentist’s wife.  And yet those are the very people who are likely to give you advice, a connection, or support when you least expect it.  Lily agrees that if her neighbor hadn’t given her a job lead, someone else in her  “social convoy”–the collection of people she’s amassed over the years–probably would have.  “My last two jobs came through a former coworker,” she recalled, “and the one before that, through a friend  of a friend.”

To whom would you turn in case of a major upheaval in your life? Job loss? Divorce? An unexpected move?  Surprising research shows that most of us need not look further than our own social convoy, especially if it is comprised of intimates and consequential strangers from all walks of life.   It makes you “smarter” when you interact with different kinds of people. You learn a little from one, gather another tid bit from someone else.  You become flexible, knowledgeable about a lot of subjects, and better at conversational banter.  As a result, you can socialize anywhere–and travel up the career ladder. Most important, each one of your casual connections is a hidden  resource.  And the simple exchange of sharing a problem also sends a powerful message to your psyche: You are not alone.  

To find out how diverse your convoy is, take the Occupation Test to see how you compare to national averages.

5 Steps Anyone Can Take to Raise Their Social IQ

Someone at a speaker’s bureau recently asked, “What about people who aren’t natural connectors? What do they do?” Her question implied that Consequential Strangers is about the need to “network,” but she missed the point: The message of the book is to broaden your social awareness–which anyone can do, regardless of his or her personality.

Granted, certain kinds of folks–extroverts, city dwellers, salespeople, media types, and women–find it relatively easy to meet people and make small talk. As a result, they probably accumulate more consequential strangers than people who are on the shy side or in an isolated setting. But almost everyone–even someone in tiny Medaryville, Indiana, population 549 at last count–has some consequential strangers. My point is that no matter who you are, you can make the most of them.

1. Become aware of the consequential strangers in your life.  Of anyone who is not part of your inner cirle, ask yourself, “Where do I see and spend time with this person?” Chances are, it’s a place or activity–work, the gym, a school, church, your commute, your neighborhood, the ball field.  The goal is to see your life through a social lens: as a cavalcade of relationships, not just a series of events.

2. Look at the resources you already have. Revisit your history through this perspective. What has each the person given you? And what can you count on in the future? Advice? A laugh? Gossip? Job leads? Agita ? The greater the variety of people in your life, the more resources you have. (Take the Occupation Test –posted on May 31–to see whether your convoy is diverse.)

3. Scout out new possibilities. Give a stranger a moment’s thought. You can choose not to engage, but you could also take one little step. Smile, nod, say hello. Use the person’s name; ask something about him; find a small patch of common ground. Offer a tidbit about yourself but be appropriate. (Don’t open the conversation with a true confession.) The exchange will be pleasant (because you are). You might never see that person again, but if you do, you can pick up where you left off.

4. Add to your convoy as needed. On a good day, most of us are flooded in information and have to make complex decisions–what car to buy, where to send the kids to school, what to do with the 401K, how to build a website, whether or not to Twitter. And in crisis–illness, accident, divorce, depression (our own or the economy’s), it’s even harder. We simply can’t do it alone–or just with loved ones.

5. Recruit new people into your convoy who have the expertise, information, or empathy you need.Seek out professional help if you can afford it or ask people you know to recommend people they know. Also, go to places (a support group, a convention, an association, a cyber café, a web community) where you’re likely to meet a stranger who fits the bill. And then go back to #3 and turn that stranger into a consequential stranger!

A word to the shy: Start small, build social muscle slowly, and watch the results.