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My Cancer And Lisa B. Adams’: Don’t Let Anyone Write You Off

By Marie Colantoni Pechet
Guest contributor

For a long time, I lived a fun life with a great job, a handsome husband and beautiful children. I wore fabulous clothes and went to fun parties and trendy restaurants. I exercised and ate healthy foods and had a positive mental attitude, which I believed contributed to my privileged life.

Marie Pechet and family, summer 2013 (courtesy)

Marie Pechet and family, summer 2013 (courtesy)

In that life, illness didn’t happen to me. It didn’t happen to most of my social circle or my family, and, other than the rare accident, death was something that happened only to the generation or two ahead of me. Illness and death were not pretty or fun or any part of that life.

When I had the hubris of the healthy, I would distance myself from the rare friend who became sick. They must have done something that caused it, I might have thought. They were living an unhealthy life or caught some bad karma. Call me when you’re better. I didn’t actively think these things, but I might as well have.

Then it happened to me: In my forties, with two young children, I received a stage 4 cancer diagnosis. Despite my best efforts, it is conceivable that I did something to cause it, lived in some unhealthy way or had bad karma. For whatever reason, I am where I am.

I recently read some of the articles on the Lisa Bonchek Adams controversy. In case you missed it, Lisa has been busy on social media documenting her life with stage 4 cancer.  On Jan. 12, in a, frankly, tone-deaf opinion piece, former New York Times executive editor Bill Keller triggered a web firestorm by suggesting that Lisa is not appropriately facing her own imminent death. (Keller’s wife, writer Emma Gilbey Keller, also wrote a piece that offended Lisa’s followers; the article, published in The Guardian, was subsequently pulled from the publication’s website, according to reports. The WBUR/NPR show On Point is discussing the controversy today here.)

Like Lisa, I am a mother. I am dealing with a stage 4 cancer diagnosis. I have been at this for six years. I am lucky enough to have the support of family and friends. And I blog.

Screen shot 2014-01-15 at 10.30.58 AMLike many writers, I find the process of writing therapeutic. It helps me to sort out my experiences and emotions. It helps me to connect with others in what can definitely be an isolating process. And sometimes, it seems to help others.

Through my blog, I’ve met amazing people, many of whom are also cancer patients. Most of them blog as well, Continue reading

‘Thigh Gap’: Reflections On Teenage Girls’ Latest Obsession

By Sylvia Pagan Westphal
Guest Contributor

A few weeks ago, my 13-year-old daughter brought up the issue of the “thigh gap.”

A thigh-what? I thought. I Googled it and was appalled by the latest teenage girl obsession: having ultra-skinny thighs, so much so that one can see a space in between them when feet are touching (hence, the gap) is a trait many teenagers now covet. Of course, for many, this idealized gap is physically impossible to attain. (Still, I must admit to checking in the closet mirror to see if I had one.)

topgold/flickr, creative commons

topgold/flickr, creative commons

I was relieved when my daughter said she found the trend unhealthy. At the same time, she said, it’s unavoidable.

“You hear about it from your friends, it just travels,” she says. “Usually when you first find out about the thigh gap, the normal instinct is to Google it and one of the things that comes up is Tumblr and you get these crazy blogs on how to get a thigh gap and how to diet so you get it.”

(It’s true, some of these sites are a parent’s nightmare, from Cara’s Thigh Gap on twitter, which I’m not even linking to it because of the inappropriate content, to less-bad-but-still-troubling Operation Thigh Gap. Even this level-headed wiki-how is anxiety-producing, in that it confirms the ubiquity of the trend.)

It’s a tough world out there for our teens. We bombard them with conflicting messages to stay fit and be healthy (see Michelle Obama) while at the same time asking them not to get too neurotic about their body image. Some of us mothers send mixed messages too. What matters is how beautiful you are on the inside, we tell them, yet we work out and order salads for dinner Continue reading

Who Quits Facebook? Study Says Internet-Addicted, Private People

File photo, two workers inside of Facebook headquarters in Menlo Park, Calif.  (AP)

Facebook is a way to stay connected in an increasingly digital world. (AP)

Facebook boasts more than a billion active monthly users, and the numbers keep growing. But recently, a counter-trend has emerged: many Facebook members have been pulling the plug on their accounts. Is there a difference between the types of people who continue to use the website and those who deactivate?  A new study suggests that “Facebook quitters,” as the researchers put it, have different personality traits from those who stay. From the paper’s abstract:

We found Facebook quitters to be significantly more cautious about their privacy, having higher Internet addiction scores, and being more conscientious than Facebook users. The main self-stated reason for committing virtual identity suicide was privacy concerns (48 percent).

And from the press release:

If you are ready to commit “virtual identity suicide,” delete your Facebook account, and say good-bye to social networking sites, you are not alone. A social networking counter movement is emerging, and Facebook quitters, who remove their accounts, differ from Facebook users in several key ways, as described in an article in Cyberpsychology, Behavior, and Social Networking.

“Given high profile stories such as WikiLeaks and the recent NSA surveillance reports, individual citizens are becoming increasingly more wary of cyber-related privacy concerns,” says Brenda K. Wiederhold, PhD, MBA, BCIA, Editor-in-Chief of Cyberpsychology, Behavior, and Social Networking, from the Interactive Media Institute, San Diego, CA. “With photo tags, profiling, and internet dependency issues, research such as Professor Stieger’s is very timely.”

On a related note: a recent article in the New Yorker discussed how certain types of Facebook use can make people unhappy. If users lurk around the site, they are more likely to be psychologically affected by practicing social comparison. But according to the article, if users actively participate in online dialogue, they gain happiness from Facebook use.

Put those findings together with this new study on quitters, and a purely speculative hypothesis could present itself: a concern for privacy could prevent people from fully interacting with Facebook; but because this behavior causes unhappiness, they might be more likely to become quitters.

Readers, have you quit Facebook or do you know someone who has? Why did you or they commit “virtual identity suicide”?

Tumblr Blocks Some Mental Health Topics, Thwarts Therapy

LibbiAs a member of the Millennial Generation, Libbi Gildea, 20, discovered a new coping mechanism for dealing with an age-old mental health issue – social media.

But just as she started to heal from a personal trauma, she found that a tech giant was starting to dismantle her new, safe space.

In December 2012, Libbi was raped on the campus of a prestigious school in Massachusetts. She was 19 at the time, a college sophomore. After the attack, she developed PTSD and depression and took time off school, trying to heal. She spent time recovering in the hospital, and traditional talk therapy helped. But, she says, she found the most comfort in a more contemporary setting. Libbi joined the microblogging site Tumblr and started browsing posts tagged with topics she was interested in, like depression and PTSD, meeting others that were going through similar experiences. In an interview, she gave me permission to use her name, and explained how she evolved from feeling totally alone after the assault, to much more connected and supported through social media:

I felt really isolated because I didn’t know anyone else that had PTSD. You don’t realize that what you’re experiencing is normal … After I was done with the hospital and I didn’t have group therapy anymore, a friend mentioned that there was a pretty vibrant mental health community on Tumblr.

So I made a blog there. I started randomly one day, posting that I wished I could make a mental health “resume” so I wouldn’t have to go through my experience every time I saw a new doctor. I did another post of more of a personal nature on the night of my birthday because I was angry and feeling that my attacker had taken a lot away from me. I wrote him an open letter that said, “You may have raped me, you may have taken this from me, but I’m still here, and my life is only going to get better, and frankly, I feel sorry for you.” Continue reading

Using The Social Network As A Public Health Treasure Trove

Here’s a bit of a recent thread on QuitNet, an online social forum to help people quit smoking, tagged “Can’t STOP the Tears:”

Gidget74: “I am crying a lot for no reason.  I just think of it as another way for my body to purge the nicotine.”

divinem: “I shed an ocean of tears during my first year.  Let them wash away the pain deep inside.  Quitting takes us to new heights – and depths”

lynnTheSurvivor:  “Thank you ALL so much J!  Feeling better today J”

kickthehabit101: “Glad you are better…one thing about getting so far down…the only way to go st up!”

lynnTheSurvivor:  “I think the world of you!  Thanks hunny!”

That conversation may look like a run-of-the-mill online chat to you, but to Professor Damon Centola, a researcher at MIT’s Sloan School of Management, it is a new kind of laboratory — and an example of a potential goldmine of information on how to help people live healthier lives.

“Online health environments may provide a brand new opportunity for research on the social determinants of health,” he  said.

Centola published a paper in the American Heart Association’s journal Circulation  last month on how Facebook, Twitter and specialized social networks like QuitNet form a new frontier for researching health behavior. He analyzed the results of several studies examining the link between online influence and health behaviors, which suggest successes in behaviors like smoking cessation, exercise and medication compliance can be shaped by interactions over web-based social platforms.

It’s no shocker that social networks can influence behavior — everything from succeeding at Weight Watchers, for instance, to actually getting a mammogram after years of delays and canceled appointments.  What Centola is fired up about is the idea that online social forums are treasure troves for gleaning real-time behavioral data, Continue reading

Amanda Palmer, Tweeting On Health Insurance, Hits A Nerve

Hat tip to Martha Bebinger who writes on her Healthcare Savvy blog about musician/performer/social media phenomenon Amanda Palmer’s new fascination with health insurance.

Amanda Palmer tweets on health insurance and her ever-reliable fans respond. (Photo: amandapalmer.net)

Here’s the story behind Palmer’s #InsurancePoll:

It all started when Palmer, casually reading The Sunday Times and tweeting on the train, came across Nick Kristof’s heartbreaking column this weekend about his old friend and college roommate dying of prostate cancer in large part because he had no health insurance (and as a result, continuously delayed medical care until he was diagnosed with late-stage cancer). Palmer writes on her blog that the column moved her deeply:

it hit a nerve with me, and i sent a few musing tweets about my own experiences with insurance…

most small-to-mid-level musicians i know don’t have health insurance. some musicians find tricky ways, some pay, most take the risk & pray.

when i was in my early twenties, buying my own insurance would have been equal half my rent. it just didn’t seem like an option. (cont…)

my parents had just watched the death of my step-brother (uninsured when stricken with a disease) almost destroy the family bank…(cont).

…and so they DEMANDED i get insurance. we fought. they offered to pay half. i agreed. i was lucky. many aren’t. think about it. #AndVote.

…and then people starting musing back at me, in their own tweets, about their own experiences with insurance. i could tell i’d hit somewhat of a nerve with THEM, and then it occurred to me that’d it’d probably lead to a fascinating cross-section of
information if i asked everybody on my feed what their current situation was…

So Palmer decide to conduct a little survey and almost immediately, her 698K Twitter followers began to respond:

quick twitter poll. 1) COUNTRY?! 2) profession? 3) insured? 4) if not, why not, if so, at what cost per month (or covered by job)?

…and my feed EXPLODED. EXPLODED. i found out that twitter has a twitter LIMIT (you can’t tweet more than 100 tweets/RTs in an hour – which is probably to prevent actual pornbots and such) and i went to “twitter jail” twice. but the force of what people wanted to share was unstoppable. i think i probably got more than 2k responses to the question. i only wish that i could have shared every single response, because the story it’s all telling is huge. deep. painful. crazy.

Now, she’s heard from teachers and nurses, a British doctor with free NHS care, “thank goodness” and a U.S. writer who lost her coverage when she left an abusive spouse and now can’t afford insurance at all. Two breast cancer survivors tweeted that they couldn’t get coverage because they are deemed “high-risk.” The response was so overwhelming that Palmer recruited a volunteer to help tally the data: Continue reading

It’s A Kind World After All: New Blog Collects Random Acts Of Humanity

prayerfriends/flickr

Reporters never cover good news. Everything in the paper/online/on the air/on TV is a downer. That’s essentially what people think about the media, right?

Well, Nate Goldman, a 23-year-old social media producer at WBUR has set out to change that…through voicemail and various other forms of storytelling.

His new “online experiment,” Kind World invites folks to leave a message about any random act of kindness, large or small, that moves them or changes their world in some way. I just noticed Kind World today, with this heartfelt medical-related post by Rick Colson of Watertown, whose wife died of breast cancer. You can listen to it online. Or read the transcript:

My wife was diagnosed with an environmentally related form of breast cancer many years ago and she passed away about two years ago. And after her diagnosis it became clear that one of the things that was going to be vital to try and help keep her well was a supply of good, quality organic foods. A neighbor from town during the time that my late wife was ill came by once a month with a little bag inside of which was a $500 gift certificate to Whole Foods. I can’t even begin to tell you the impact that this had on us. Month after month after month it allowed her to have the best nutrition she could find, the organic foods that she needed. And unfortunately her illness overcame her and she did ultimately pass away, but I will forever be grateful to the neighbors who did this for us – without being asked, entirely on their own, unselfishly. And I only wish there were more people like that in this world.

Nate said he created Kind World “to try to balance all of the negative news that’s painted the world. I wanted to show that despite how bad the world may seem, there are still these small acts of kindness happening all the time that are moving people.”

If you want to pass along a message or story about a kind act in your world, call Nate: 617-651-0909.

Social Media Anxiety Disorder (SMAD): The Next New Medical Condition?

Could the pressure of social media trigger trigger a mental disorder?

I had what might have been a symptom last month.

It happened the night I created a Pinterest account.  Pinterest is not inherently scary.  At least it shouldn’t be. It’s just one more thing.  One more place where there are a lot of eyeballs — which of course I want directed at my stuff.  One more place where I have to make new friends.  One more place where I don’t really know how to act or what to say.

I woke up that morning after signing up with Pinterest (and creating my first board) with my heart beating faster than usual.  This is silly, I thought.  If Pinterest is going to stress you out, I counseled my Inner Type A, just don’t do it.  No, no, said the ambitious one, this is where the women are, your target audience, you have to have a presence here.  The voices battled and prattled on.

I put both feet on the floor next to my bed before I picked up my phone.  I had vowed not to be one of those people who check their phone before they get out of bed. I would not get addicted to Twitter. I would make sure I was sitting up, with my feet out of bed before I slid one thumb to the Twitter, FB or email apps on my phone.

But I started to wonder that morning if I was getting a little out of control with the social media.  A racing heart triggered by Pinterest doesn’t sound normal.  Could Social Media Anxiety Disorder (or Social Media Anxiety Syndrome) be the next illness we create? Continue reading

How Twitter, Social Media Helped Detect Cholera In Haiti

Tweets From An Epidemic, Oct. 2010

In October 2010, when cholera was just beginning to spread through earthquake-ravaged Haiti, Tweets, blogs and other Internet-based social media detected and tracked the epidemic faster than traditional methods such as government surveillance reports, according to a new analysis by researchers at Children’s Hospital Boston and Harvard Medical School.

The cholera epidemic has now killed nearly 7,000 people and sickened almost half a million.

The social media study, part of a special Haiti-themed issue of the American Journal of Tropical Medicine and Hygiene, is characterized in a news release as “the first to demonstrate the use of data from “informal” media sources in monitoring an outbreak of a neglected tropical disease in a resource-limited setting,” and it demonstrates that “these sources can yield reliable decision-making data during deadly disease outbreaks almost in real-time, often far earlier than traditional surveillance methods that include surveys of hospitals and health clinics…”

The release quotes Rumi Chunara, Ph.D, of the Informatics Program at Children’s Hospital Boston, Research Fellow at Harvard Medical School, and the lead author of the study:

“When we analyzed news and Twitter feeds from the early days of the epidemic in 2010, we found they could be mined for valuable information on the cholera outbreak that was available up to two weeks ahead of surveillance reports issued by the government health ministry. The techniques we employed eventually could be used around the world as an affordable and efficient way to quickly detect the onset of an epidemic and then intervene with such things as vaccines and antibiotics…” Continue reading

Facebook Depression? Not So Fast Say MGH Shrinks

Facebook doesn't cause depression, say a pair of MGH psychiatrists

So, the highly influential American Academy of Pediatrics recently released a report on the impact of social media on kids and families, and in it the group cites a newish phenomenon afflicting teenagers called “Facebook Depression.”

They define the disorder like this: “depression that develops when preteens and teens spend a great deal of time on social media sites, such as Facebook, and then begin to exhibit classic symptoms of depression.”

Well, a pair of child psychiatrists from Massachusetts General Hospital challenge the AAP’s assertion that a specific depressive disorder linked to Facebook exists, in a piece on the MGH website. The psychiatrists, Dr. Eugene Beresin, Director of the Center for Mental Health and Media at the MGH Department of Psychiatry and Associate Director Dr. Tristan Gorrindo suggest such a diagnosis could be problematic in several ways.

For one thing, Dr. Beresin says, it trivializes a serious neurobiological disorder (“Oh, it’s just Facebook Depression — not to worry” ).

Moreover, he adds, simply spending several hours fixed on a single activity might not necessarily be so bad. “I was groomed to be a concert pianist,” Beresin says. “I practiced piano 3, 4 hours a day, and no one called me “pianist depressed.”

And for some painfully awkward or shy kids, Facebook, or other social media, might actually be the pathway toward better social integration, he says.

Here, the doctors explain further:

While we applaud the efforts of the AAP to bring the dangers of unmonitored or extensive social media use to the attention of parents and clinicians, we worry that the term “Facebook Depression,” might be more confusing than helpful. As child psychiatrists, what concerns us is that there is no scientific study of this diagnosis, nor are there criteria for how this diagnosis is made. This might be confusing for parents and clinicians who see it billed in this report with the same level of importance as sexting, cyberbullying, and other behaviors that we know to be detrimental to children.

Additionally, the term “Facebook Depression,” confuses the real meaning of the term depression. A diagnosis of “depression” should not be based on the amount of time one spends with a particular media. Certainly, a student who practices piano five hours a day and then develops symptoms of depression, does not have “piano depression.” While it may be true that the excessive use of social media may be a form of an “addiction” or other “disorder” provided that it is dysfunctional and disrupts social, academic, or recreational functioning, these behaviors have not yet been formally labeled as disorders because careful research and clarification of these behaviors has not yet been completed – a similar process is needed before “Facebook Depression” can be deemed a valid disorder.

Beresin and Gorrindo explicitly state they don’t believe Facebook can cause depression (phew)! However, they do offer five important tips to parents of screen-addicted teens, and to pediatricians:

1. For pediatricians, we recommend that they incorporate an assessment of a teens “media diet” into all their check-up visits with teens. A Media Inventory should be a core part of all medical histories for children, adolescents and adults.

2. For parents, we agree with the AAP recommendation that they should be discussing internet use with their kids. However, we feel that these discussions should start long before their children are teens. Parents should begin talking to kids about computer use as early as possible. In fact, parents should be talking with their kids about relationships, risky behavior and other important social issues from early childhood – setting a tone early on that parents are open to discussion about confusing and difficult topics. Continue reading