Category: resources

One of the things I love best about working at WEGO Health is hearing directly from Health Activists about their motivations for going – and staying – online; essentially, how the internet and social media has changed the lives of both patients and caregivers today.  Generally, we hear that people go online looking for support and information around their diagnosis, or that of a loved one, and that for the most part, they find both support and information within that online community and that the majority of experiences within the online community are positive.  As a Health Activist yourself, I’m sure you know that this is a major factor in wanting to stay active and engaged within the online community.


But let’s get real, it’s not all rainbows and sunshine; sometimes you have community members who are negative, disruptive, or even downright mean.


The Pew Internet & American Life Project (if you’re not familiar with Pew, you should definitely check them out – great resource for internet-related research) recently released a new study on ‘The tone of life on social networking sites’ and it got me thinking about what Health Activists see every day as well as what we see in our own community here at WEGO Health.  The top line findings from Pew’s report were in line with what my gut tells me about health communities online (“social networking sites” or SNS):


  • 85% of SNS-using adults say that their experience on the sites is that people are mostly kind
  • 49% of SNS-using adults said that they have seen mean or cruel behavior displayed by others at least occasionally
  • 13% of SNS-using adults say yes to “has someone been mean or cruel to you personally”


But, what I found really interesting was some of the information that came from downloading the full text of both questions and answers related to this study.  Pew did a great job in probing participants about what actually happens within the community when there is negative, mean, or cruel behavior.  A few more data points for you:



Frequently Sometimes Once in awhile Never Don’t Know Refuse
When people on social networking sites are being mean or offensive, how often, if ever, do others… defend the person or group who is being harassed or insulted? 22% 32% 23% 15% 7% 1%
When people on social networking sites are being mean or offensive, how often, if ever, do others… tell the person to stop? 21% 27% 24% 22% 6% 1%
When people on social networking sites are being mean or offensive, how often, if ever, do others… join in the mean or offensive behavior? 10% 26% 31% 28% 5% 0%
When people on social networking sites are being mean or offensive, how often, if ever, do others… just ignore the behavior? 45% 28% 13% 8% 6% 1%


Based on these Pew findings, there is a fair amount of negative or mean behavior that goes unaddressed by the community at large.  Having had my own experiences within social networks, I don’t find this hard to believe but when I think about health communities specifically, I’m less sure.  Based on what I’ve seen of both Health Activists and community members, health networks are “safer” than the standard social network and most members are welcoming and accepting, but also that community members are more likely to call others out when they’re acting inappropriately.


Pew focused on all social networking sites but it would be interesting to see how health sites compare.


What has your experience been within your own communities?


We love bringing great new resources to Health Activists and members of the online health community. It is our hope that, by sharing information and resources, we can all encourage patients to lead healthier, more empowered lives. This is why we’re looking forward to sharing these new videos, links, and pages about joint health with you.


You may have seen our Joint Pain Channel over on that showcases outstanding videos with Health Activists in the Joint Pain Community. We created the channel because we know that education is the first step to being an empowered patient. This is why we’ve added brand new resources to the page to offer even more great information for the Joint Pain Community. The resources include a program that will help patients better understand their joint fitness level through screening. And videos that also provide education and exercises to help patients actively participate in their own joint care.


These new sponsored resources touch upon Self Joint Health Home Screening so patients can assess their own individual joint health. Other resources show detailed exercises for you to try and determine your own personal fitness level. Another featured resource focuses on the ORTHOVISC brand 5 Minute Knee Health Workout that will help people who experience knee pain to strengthen their knees and proactively reduce pain and improve their overall knee health.


Visit the Joint Pain Channel to check it out!


For more information, check out the Orthovisc page on Facebook.


We’re looking forward to hearing what you and your community members think of these new resources and what else you’d like us to add to the Joint Pain Channel!


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To many of us, caring comes naturally and we’d do it no matter how difficult it becomes. But caregiving can be an extremely taxing role physically, financially, mentally, and emotionally. Colin investigated research that’s been conducted on the origins and motivations of empathy and the possible repercussions that arise from caregiving. –Amanda

Compassion Fatigue and the Science of Empathy

by Colin DeMatteis


Something strange happens to us when we sit down to watch a dramatic movie or read a well-written novel. If the actors are skilled enough or the author knows their craft, we naturally place ourselves with the characters and feel for them. To use the old phrase, we place ourselves in someone else’s shoes.

Imagine a detached mind – perhaps a scientist – observing us as we empathize. How odd that we not only imagine ourselves in another situation, but we do so subconsciously.

A recently developed field, the neuroscience of empathy, has been studying our empathic reactions for some time. Some, like Dr. Jean Decety of the University of Chicago, are uncovering evidence that human beings are hard wired to feel empathy.  As quoted in a 2006 article from the University of Chicago Magazine, “a baby who listens to another baby cry will begin to cry too.”

Decety carried out a series of experiments to measure how our brains react to seeing others in distress. From Chicago Magazine: “Studies show an overlap in the neural regions that process personal pain and the pain of others. ‘But … it is not a complete overlap. The person [in the fMRI] is not actually in pain.’ The brain knows the difference, ‘and that is important.’”

When we see another person in pain, we have much of the same reaction as if we are in pain ourselves. Many of us experience empathy on a limited basis: we feel it everyday, but it does not overwhelm us.

But consider those who make a career out of empathy: doctors, firefighters, social workers, hospice nurses, caregivers, even veterinarians. Working with people in pain or distress makes us (literally) feel for them. Day after day, handling these powerful emotions can wear us out and sometimes give us the same conditions we are treating.

This is compassion fatigue: also called Caregiver Burnout or Secondary Traumatic Stress Disorder. Its symptoms include feelings of hopelessness, stress, inability to focus, and depression. Anyone can develop compassion fatigue; the only prerequisite is that they have a functioning sense of empathy.

Compassion fatigue is our natural ability to empathize run amok. In the case of social workers or family caregivers, it can actually be a form of Post-Traumatic Stress Disorder. While 7.8 percent of the population experiences PTSD in their lifetime, a 2007 Study found 15 percent of Social Workers surveyed met the diagnostic criteria for PTSD. Working with people suffering from PTSD or other conditions doubles their chance of developing similar symptoms and compassion fatigue.

We can even go so far as to take blame for events in which we did not participate. As documented in Eula Biss’s Essay All Apologies (Audio) Ed Daily, who gave his false report of the No Gun Ri Massacre during the Korean War, was not actually at the village, but heard about it second hand.

As we at WEGO Health have been discussing this month, when we care and advocate for others, we need to remember to care for ourselves. The Compassion Fatigue Awareness Project has some excellent resources to learn more and find help, and for spousal caregivers there is the aforementioned Well Spouse Association.

The CFAP has a list of actions to keep in mind while caring for another, but the first point is probably the most important: Be kind to yourself.

To learn more, check out this group of links from Trauma Central for some very informative articles.

Do you think that being a compassionate Health Activist – leading your community despite their pain, listening to your online friends’ pain and hardship, and having your empathy light on – can wear on your well-being?


Zombie Prevention Week

In honor of Brain Awareness Week (a week that aptly contains the birthday of famous brain Albert Einstein – whose own brain, apparently weighed roughly 500g less than the average adult brain.) I wanted to share with you the noble mission behind this week and take a few minutes to reflect upon how important neuroscience is. In the past few decades alone, significant advances in the field of neuroscience have been made. It’s no secret that our brains are the epicenters of our bodies and, really, our person-hood and lives – but we have a lot more to learn about them. The mission of Brain Awareness Week is to recognize and encourage the behind-the-scenes efforts of the scientific community to learn, research, discover, map, and further understand these grayish three-pound fat-masses we so greatly rely upon.

According to the Society for Neuroscience (SFN) (the awesome resource I am using to write this post), Brain Awareness Week (BAW) is “is an inspirational global campaign that unites those who share an interest in elevating public awareness about the progress and benefits of brain and nervous system research.” The goals of this week are to:

  • Inspire the next generation of scientists
  • Contribute to general understanding of basic brain functions
  • Improve public health by expanding awareness of neurological disorders
  • Make the connection between increased support for biomedical research and benefits to public health
  • All of which are awesome pursuits!

    The work of a neuroscientist is, as you’d expect, complicated. Our brains, complete with 100 billion nerves cells (think of all the stars in our galaxy – that’s the number of nerves you have in your brain), controls us in every way. Not only do they influence our actions like walking, talking, and using our senses – they help us function as emotional, rational, and social animals. The latter adds a level of complexity to neuroscientists’ work that is both fascinating and infinitely challenging. According to SFN, the motivation of these scientists are: 1) to understand human behavior better and 2) to discover ways to prevent or cure many devastating brain disorders. I decided to read through the SFN’s Brain Fact PDF to see just how neuroscience has influenced our different health communities. Just as our brains are central to our bodies, advances in brain science is central to the research of all of our individual health conditions. Read on to see what I mean. But, since, I get pretty wordy, you’re going to have to jump! (Think of it as an excited hop for your brain.) Continue reading →

    This Week on WEGO Health Loves: Twitter

    No really, we do. Seems like everyone is talking about Twitter these days and everyone has an opinion about how best to use it. Though there is one thing we really love about Twitter – the people!

    We’ve met some many wonderful health folks, including:

    And those are just a few! Please visit our growing community – there’s something for everyone, migraines, food allergies or something different all together there’s a Health Activist there offering tips, treatment options and support.

    Do you love Twitter as much as we do – or simply want to know what all the buzz is about? Then why not join us for our encore webinar presentation of Twitter Power Tools for Health Activists next Thursday, July 9th 8PM to 9PM ET.

    “Twitter Power Tools for Health Activists” is the second in a series of webinars designed to help you make the most of your Twitter account. During this 45 minute presentation, we’ll give you a guided tour of some of the most useful third party twitter applications to help you save time, reach more tweeps, and take tweeting to the next level. Register now!

    New to Twitter, then be sure to check out Twitter Fundamentals for tips on how to get started.

    Please note that all archived webinars to be available soon for WEGO Health members. Stay tuned or register to be notified.

    Modern biomedicine is rife with dilemma. Cells and DNA, hormones, lesions and blood counts are agents of the biomedical diagnosis that often explain a condition as if it were analyzed outside of the patient’s body—like a weed that can be uprooted before it begins to envelop the garden. Yet illnesses are not just pathological processes to be understood and explained solely through the lens of a microscope or the language of science.

    In “Living With a Hidden Illness,”Alison Potts describes the pain of hiding her Multiple Sclerosis, an autoimmune condition, which has caused her to feel like she has a permanent case of the flu and tainted her memory, arresting her paramount passion for writing. But because these symptoms are hidden, Potts is frequently probed about the reality of her condition.

    In “The Spoon Theory,” Christine Miserandino recalls an instance when she used 12 spoons to explain to a friend what life is like living with Lupus, a chronic autoimmune disease that often causes extreme fatigue, headaches, anemia and chronic pain. Christina’s spoon theory sprung from her struggle to find the right words:

    “I quickly grabbed every spoon on the table…I explained that the difference between being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

    After Christina gave her friend 12 spoons, she then broke down every daily task that drains her energy (a spoon), like showering, brushing her teeth and putting her clothes on. Six spoons were gone before her friend had even theoretically left for work. Christina’s story suggests that perhaps when language fails there may be other ways of sharing what life is like living with an invisible illness.

    Last year I got to know a charming seven-year-old named Gwendolyn who has Mitochondrial Disease. Like Christina, Gwen’s energy is limited and wanes with movement. I wrote an article about her in which Kim, Gwen’s mother, says she wishes she could hand out the lessons of her daughter’s disease on a silver platter:

    “Going to the beach requires an entire day of preparation: scheduling her meds so that she’ll be unhooked from her IV for two hours, taping up her chest, having to do a painful dressing change afterwards, carrying all her supplies, bringing a nurse. All for the joy of those two hours. It’s all worth it. It makes every time you do something so utterly powerful.”

    For Kim solace has come from sharing her daughter’s story. In 2006 she became President of MitoAction, a grassroots organization dedicated to educate and advocate for families living with Mitochondrial Disease.

    While the journey is tough, there are resources and support available to individuals, and families, affected with silent illnesses:

    • When words fail, symbols or images can help with explanations: “spoon theory” or “a vacant lot
    • If you can’t tell everyone, try finding one trustworthy friend or family member with whom to share your experience
    • Look for a community like WEGO Health to meet others who share your condition
    • Try writing a “dear disease” letter, like the Dystonia community did, to express your feelings, thoughts and frustrations

    These are just a few ideas to help, but no matter what diagnosis a person is given, nothing is black and white and there are thousands of different ways people learn to live with hidden illness. Please share your thoughts on how you have learned or are learning to live with your health condition and tailor strategies to your personal needs!

    Written by Haley Newman, WEGO Health Intern. Haley Newman is a Community Health and Asian Studies Major at Tufts University. She aspires to someday become a caring physician and anthropologist. For fun Haley enjoys running by the ocean, yoga, guitar, photography, reading, writing, sushi and listening to people tell stories.

    In our ongoing effort to empower Health Activists, WEGO Health will be hosting a “Twitter for Health Activists” webinar event this Monday, April 6th at 8PM Eastern Standard Time.

    We all know that Twitter
    is taking the web by storm. In fact, according to
    Quantcast, there are now over 6 million users on Twitter. Whether you’re a Twitter veteran or simply a curious outsider, as a Health Activist you have the unique opportunity to use Twitter to further connect, share and empower others. This online event with help you to gain insight into how to better use Twitter as a means for building community, advocating and promoting awareness of health conditions and issues.

    Event details:
    For full event listing

    • This event will be held on Monday, April 6th at 8pm Eastern Standard Time
    • The presentation will last approximately 45 minutes with Q&A directly following – the session will last no longer than one hour
    • Please note that this event will be held remotely
    • Participants can join from anywhere in the country, but will be required to be online and on the phone at the same time

    Please RSVP by registering and completing a WEGO Health profile, and then simply mark that you’ll be attending the event on the event page. An event confirmation and reminder with more details will be sent out later this week. Please contact with questions.