Category: how to

Get ready to hear even more about in person events from our own super-sociable public-speaking extraordinaire Bob Brooks.

In our first video of the series – Bob discussed what you need to do when you’re planning to attend an in-person event – what you should say, who you should plan to talk with, and how to get your elevator pitch down.

In this new video, Bob takes us inside the conference (literally – he was about to attend one as he filmed this!). Hear how to make the most of offline, in-person events and how you can get comfortable being chatty with others and really make the most of the environment.

Bob delves into three key things about conference-attending:

  • Meeting
  • Engaging
  • Moving On
  • If you’re even a little hesitant about how to go about making connections or making the most of a meet-up, these are seriously great tips.

    Check it out here:


    Every day, it seems there are more in person events for Health Activists and their communities. Whether it’s a conference, an awareness event, a tweet-up, a networking event, or something in our Speakers Bureau Program – there are so many important offline events to attend. By getting involved, it’ll help solidify your identity as an advocate and really uncover new ways for you to take your efforts to an elevated, professional level. You never know the opportunities that may arise from networking events – which is why it’s so important to get the most out of them.


    For some (like WEGO Health’s own Bob Brooks), public speaking and socializing come naturally. But for others, planning ahead could mean the difference between being too nervous to go and being prepared to attend and having an amazing, valuable time. So, in conjunction with Bob, we’ve created a video to help Health Activists get ready to make the most of these offline, in person events.


    In this first video, Bob delves into the philosophy behind in person events and what you should expect and prepare ahead of time. A gifted speaker (and, if you’ve met him – a really skilled socializer), Bob has some great tips for you to consider. Even if Health Activism isn’t your full-time job, there are some job-related networking techniques that will be helpful for taking your awesome online personality face-to-face. In line with our Working and Health Activism month, this video is a great way for Bob to share what he does every day for work and how it can really influence others’ Health Activism.


    We’re really excited about our new channel and how it’s shared the mission of Health Activists in a new, interactive way. There’s nothing quite like seeing your favorite blogger share their thoughts in action. Video is a huge component of the online world and growing daily in how it is being integrated into health communities!

    This month we are hosting a live webinar that’s all about video. How to take your message from the written word – that so many Health Activists absolutely excel at – to the challenging, but also fun and influential video format!

    Join us live, Thursday, July 21st at 3pm EST. We’re going to show you how to make great interview-style videos and vlogs in this live webinar event. Because this is such an important topic, we’ll be hosting in a brand new way: doing a live video webinar through Ustream. So you’ll be able to watch and tweet along with our presenters, myself and Editorial and TV Intern Colin deMatteis and ask your questions in real time, on video!

    A few topics we’ll chat about include:

    ·         Scripts: Do’s and Don’ts of writing before recording.

    ·         Lights, Camera, Action: preparing for your video.

    ·         Red Button’s on: Recording tips

    ·         Edit that! How to take your videos and make ‘em better

    ·         Practice makes perfect: how to improve.

    ·         Q&A section! – What has held you back from taking the dive into video? We’ll try to help you work through those challenges and share some ideas for starting to record yourself and your Health Activism.

    Want to watch and tweet along? It’s going to be an exciting, experimental webinar for everyone – and hopefully we’ll have a lot of fun. Share topics and questions you’d like us to address and sign up to attend here:

    RSVP for Health Activist How To: Video

    Whether you’re a seasoned Health Activist ready to take everything to the next level of awesome or just starting out on your advocacy adventure – I’ve compiled a Health Activist’s Guide to Effective Online Advocacy with some things you should always keep in mind as you interact with your health communities!

    (Click the  to view Full Screen size!)

    Today’s post is a wonderful Guest Post (and must-read!) by Health Activist Julia Olenik blogger at the awesome blog Reasonably Well. In her guest post she shares her experience with that third relationship conflict mentioned in our theme: your condition vs. your family (and friends). Julia offers real, honest advice and I know you’re going to enjoy reading this as much as I did. –Amanda

    February, Family, and Friends

    The month of February brings with it several interesting events; one being Groundhog day, when it’s so gratifying to anticipate the end of winter. Another is Super Bowl Sunday and the best excuse ever to gather in large boisterous crowds in front of huge televisions while consuming large quantities of really-bad-for-you snacks.

    But my favorite day by far in February is Valentine’s Day. Why? Well, gifts of chocolate in heart shaped boxes from a wonderful hubby for many years are very, very good things. But aside from chowing down on a serious amount of high quality candy, Valentine’s day also is a great time to for me to take time to appreciate not only my marriage, but all the relationships with others around me.

    When I think about my relationships, mostly I think about how fortunate I am to have these special folks around me, especially since autoimmune disease entered my life. My ties with my family and friends were certainly tested during the early days of my diagnosis. I am incredibly thankful that these vital bonds survived, and eventually flourished. But it wasn’t an easy process.

    Seven years ago, I was diagnosed with Sjogren’s syndrome, and my life changed in ways that I would never have imagined. I wish that I could say that I accepted these changes with grace, but I didn’t. No, I became crabby and very self-centered. Not that I didn’t deserve to be a bit cranky: Sjogren’s brought with it bone-crunching fatigue, joint pain, the classic dry eyes and dry mouth. It also took away my job and several of my hobbies.

    I was not a happy camper.

    As I struggled to adjust to the enormous changes that my body was making, I became aware that my social circle was changing, too. Several friends that I had considered close began to just……fade away. My family and closest friends often looked at me with puzzlement and concern. They didn’t know what to make of me, and I didn’t know what to make of me, either. It was a difficult time, and I knew that if my ties with my loved ones were to survive, I needed to look to the wisdom and experiences of others who had successfully made this journey before me.

    I found a helpful perspective from another woman dealing with chronic illness in the book A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) In it, author Susan Milstrey Wells dove headlong into these same issues. She discussed the many ways that chronic illness may impact all of our relationships – those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She summed up her experiences by saying:

    Continue reading after the jump… Continue reading →

    Our goal here at WEGO Health is to be the home of Health Activists: a place for those passionate members of the online health community, who love to help others with information, resources and support.

    Many of our members tell us they are looking to connect with other Health Activists who are passionate about a particular health condition, issue, disease or topic.
    For these Health Activists, we’ve created 40 Groups, including:
    If you haven’t joined a Group on WEGO Health yet – check one out, sign in, and click the “Join Group” button today!

    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.