Expect a breakthrough in public understanding of Rheumatoid disease.
Advances in knowledge will improve treatment.
Jennyshared three inspiring quotes to propel her into Health Activism in 2011. Check out her post “Community Cookies” for the reasoning behind these quotes and what she’s planning. Here are the quotes she chose:
“Power comes from who you are, not what you have, and the transformation starts with how you allow others to treat you.” ~Suze Orman
“I am successful today because I had a friend who believed in me and I didn’t have the heart to let him down” ~Abraham Lincoln
“There is no more satisfying sound than that of wheels in motion.”
Karentook a fun approach to the HABC by doing a little bit of each of the suggestions I made. She did one fortune cookie, one Dove chocolate promise, and one favorite quote. Check out her blog post to see why she decided to go with each. Here’s what she came up with:
Confucius say even longest journey begins with one small step.
Don’t wait for opportunities, make opportunities.
A bird doesn’t sing because it has an answer, it sings because it has a song. ~Maya Angelou
I think this was a wonderful way to get everyone thinking about 2011 and I loved the creativity people injected into their posts! If you want to write 3 fortunes to your community – please do! It’s a great way to think big and play psychic. And hey – if you think it, you can achieve it, right? When you write your 3 fortunes be sure to leave a link in this discussion in our Health Bloggers group so everyone can see what you predict! Stay tuned for February’s HABC and until then why not check out the wonderful posts featured above?
A few days ago, we sent out a little Tweet prompt – the first of our “Finish This Tweet” project of 2011. (Because not all prompts are the bloggy kind, right?) We wanted to see the Health Activist Twitterverse take on their health in one word:
The answers from our Health Activists were both varied … and inspiring. Here are some of our favorites:
@lisajcopen: My #health in one word is… [a] pilgrimage.
In our ongoing mission to empower Health Activists, WEGO Health is excited to announce a new upcoming educational program – “Multiple Myeloma & Your Bones.”
In preparation for our upcoming educational program and on-demand webinar, made possible by one of WEGO Health’s sponsors, we’re asking that active members of the online cancer community and cancer Health Activists take a moment to participate in our online multiple myeloma community survey.
Using your feedback, and that of your community members, we hope to develop an educational program that directly addresses the gaps that you have identified and will serve as a useful resource for you and your communities. By completing and sharing our community survey, you will receive an exclusive invitation to take part in our upcoming educational webinar program!
After you have completed the survey, we hope you will share it with other members of your online community.
We hope you’ll take a moment to share your thoughts and expertise by taking our survey!
Earlier this month, we asked you to look ahead into 2011 and pick the top 3 goals you hope to accomplish in your health activism. Well, the results are in!
What are your top 3 Health Activist goals for 2011? (Click to enlarge)
The number one Health Activist goal for the new year is to: “Post more frequently (on your blog, in a forum or community, on Twitter, Facebook, etc.).” The number two goal is “Dedicate more time to reading & commenting on the work of others.” While number three was nearly a tie between “Grow your health community (increase readership, membership, followers, etc.)” and “Collaborate with other Health Activists on a project.” These are all awesome goals and ones that will really help 2011 be The Year of The Health Activist. Now that January’s coming to a close – let’s get started! In the spirit of goal-setting and optimism, we’ve come up with a handful of ideas to help you to accomplish these goals.
Do you want to…
Post more frequently (on your blog, in a forum or community, on Twitter, Facebook, etc.)?
Print out a calendar and mark which days you will write. Brainstorm topics in the margin and fill them in as you go along.
When you’re in the writing mood, take advantage of it! Write ahead of time and save those posts for the future.
Schedule posts to “go live” ahead of time so you can spend more time responding to your audience once the posts are live.
Ask friends to guest post. Ask a member you admire to guest post – it just might inspire them to become a Health Activist!
Reduce, reuse, recycle! It’s ok to write short posts. It’s also a great idea to look back in your archives and resurface some past content and give it new life.
Dedicate more time to reading & commenting on the work of others?
Organize your bookmarks or Reader into more categories so you can cover your bases and keep up to date.
Combine blog-reading with another activity like your morning coffee or lunch break.
Remember it’s ok to write a short comment saying “I loved this post! Thanks.” or “This really inspired me and got me thinking.” Not every comment has to be long and in-depth, write what comes to your mind.
Try different types of comments – sharing links with the author is a great way to continue the conversation and make connections.
Have a running list on a sticky note of blogs you want to comment on.
Set yourself a reminder in your calendar or an alarm on your phone to remind you to catch up on your reading/commenting.
Grow your health community (increase readership, membership, followers, etc.)?
This goes right in line with #1 and #2 – if you post more frequently and comment more often – you are more likely to gain new members if you’re visible!
Remember – great content gets noticed. Continue to improve your writing and borrow ideas from bloggers or Health Activists you admire.
Use the top 3! Be sure you’re covering all bases and sharing your content on all your social networks.
Reach out and network. If you are reading the work of others, you’re exposing yourself to new folks who might want to join your community. Say hello! Invite them back to your community.
Promote! If you’re doing something amazing – let us know! Email us or share with the community – we want to help you get recognized!
Collaborate! Which brings us to #4…
Collaborate with other Health Activists on a project?
One of our favorite phrases at WEGO Health is “Just Ask!” Just ask your fellow Health Activists – you never know what great things can happen til you do!
Connect through WEGO Health. Ask in the Groups you’re a part of. Ask us – we love to help bring Health Activists together. If you have a project idea and want us to recommend someone – we’d be happy to help.
Tweet or Facebook folks that comment on the same posts you comment on – utilize follow Friday (#ff) and find people through weekly chats.
To round out January’s focus on Thyroid Awareness Month, we’re thrilled to have had the opportunity to speak with About.com’s Thyroid Disease Guide Mary Shomon about her personal experiences with thyroid disease and her advocacy work both online and off. Diagnosed in 1995, Mary has been a passionate advocate for thyroid conditions and a Health Activist in every sense of the word. A wonderful and prolific advocate since the days of dial-up, Mary started as many Health Activists do – with diagnosis then self-education. Mary is drawn to correcting misinformation and helping others “fast-forward up the learning curve.” Dedicated to lessening the stigma related to thyroid conditions, she’s doing a lot to counteract incorrect notions about thyroid. In face, this past week Mary has begun to, quite literally, change the “face” of thyroid disease with her awareness campaign I Am The Face of Thyroid Disease with fellow thyroid activist, Katie Schwartz. Thanks, Mary, for taking the time to talk with us today – we’re so excited to learn more about your health activist story and raise awareness for thyroid in our community!
Amanda: Can you tell us a little bit about your background and why you became an advocate for your health condition? What made you get involved in the first place?
Mary: I was diagnosed with a thyroid condition back in 1995, and at that time, there were few books available about thyroid disease, and very little information out there. If you said thyroid, the mantra you’d hear was “easy to diagnose, easy to treat.” My doctor called in a prescription for me, and I thought, “great, in a few weeks, I’ll be back to normal.”
It didn’t quite work out that way. My doctor and I tried a variety of approaches, and we were both quite surprised as symptoms continued or even worsened, and new issues appeared.
It was, to be honest, frustrating and frightening.
I also knew nothing about the thyroid, and I quickly realized that I was going to have to learn more about it than the fact that it was “in the neck area!” So I started reading medical journals, and eventually went online — that was in the days when I had such a slow modem that I’d click on a link and then go get a cup of coffee because it took 10 minutes to download a single web page!
A: What made you decide to bring your crusade online?
Mary: Online, I connected with other thyroid patients, and it was both encouraging and disheartening. I recognized my own struggles in others’ stories, but I also saw that many of us were having a very difficult time — struggling to get diagnosed in the first place, or struggling to be treated respectfully by doctors, or struggling to get treated, or struggling to get the right treatment. So I created a website, and eventually brought it to what was then the Mining Company, and is now About.com. I was putting out articles, doctor interviews, and information that debunks the “thyroid disease is easy to diagnose, easy to treat” myth, and providing more realistic information, guidance and support for people with thyroid disease. Since that time, I’ve written ten books on thyroid disease, launched a patient newsletter called “Sticking Out Our Necks,” and been involved in the creation of a number of sites like the About.com thyroid site , ThyroidInfo.com, Menopause Thyroid Solution, The Thyroid Diet Revolution, and since January is Thyroid Awareness Month, the one of particular interest this time of year, Thyroid Awareness Month. More recently, I’ve branched out to social media — I’m @thyroidmary on Twitter — and Facebook— to get that information out in new ways.
A: How has the online health community helped to support and educate you? Have you used it to help support and educate others?
Mary: The online health community has helped to support and educate me, and I’ve definitely used it to help support and educate others. I would never have become a thyroid patient advocate if not for the existence of the Internet and online community.
I’ve moderated an active online thyroid support forum since 1997, and I get hundreds of emails from thyroid patients around the globe each week. Many of the story ideas, and thyroid news I’ve covered come from forum questions and emails I receive from other patients and practitioners. At the same time, sending out weekly and monthly thyroid newsletters for more than a decade, answering many thousands of emails, and publishing tens of thousands of articles, my goal has been to help other thyroid patients fast-forward up the learning curve. My mission is to do what I can to make sure that no one has to muddle through thyroid diagnosis and treatment, wondering if they are the only one experiencing difficult symptoms, feeling sick, alone, afraid, and exhausted. In many ways, I feel as if it’s been a 14 year long conversation. The arrival of social media like Twitter and Facebook has made that conversation even more interactive, supportive and personal.
A: What has been your proudest moment as a Health Activist? Or maybe your most challenging one?
Mary: I don’t know that there is one “proudest moment.” Honestly, I have them regularly. I have a proudest moment every time I receive an email from someone who says they had given up on the idea of every feeling well, and now they are in great health, and living a great life, thanks to information they read at one of my sites, or in one of my books. Or when women write to tell me that they finally got their thyroid tested and treated after reading something I wrote, and now have been able to have a healthy baby, after years of infertility and infertility treatments, while no one ever checked their thyroid. Those are the moments when I have pure gratitude for the fact that I’ve ended up as a patient advocate.
The most challenging moment as a health activist has been in trying to overcome the ongoing stigma of thyroid disease. We’ve come a long way, but we still have a long way to go. Shockingly, thyroid disease is overlooked and ignored by women’s medical groups, even though women are most affected. Endocrinology groups — and endocrinologist are supposed to be specialists in thyroid disease — seem to be much more interested in diabetes, which affects fewer people than thyroid problems. Celebrities — who are usually willing to share every intimate detail of their lives — somehow become reluctant to go public with their thyroid conditions. Even after Oprah was diagnosed with a thyroid condition, she then backpedaled and said that she had been “cured,” then said, no, she wasn’t cured, but she was refusing treatment. Meanwhile, we have advertisers, sitcoms and comedians all using the word “thyroid” as the new acceptable “code” for fat. As I said, there’s a lot more work to be done.
A: Is there anything that you wish the general public knew about your health condition?
Mary: What I wish the general public knew about thyroid disease is that we have an estimated 59 million Americans with thyroid problems, and the majority of them are NOT DIAGNOSED. So I want people to
When you can’t get pregnant, or are suffering recurrent miscarriages
When you’re gaining weight inappropriately, or can’t lose weight with diet and exercise
When you’re prescribed an antidepressant
When you have high cholesterol, and you’re prescribed a cholesterol-lowering medication (or, when the cholesterol-lowering medication isn’t working!)
When you’re losing hair, suffering from muscle and joint aches and pains, or chronic constipation
When you are feeling unusually tired or fuzzy-brained, and can’t concentrate
When you’re struggling with depression or anxiety
When you’re a woman over 40 with irregular periods, weight gain, fatigue, sleep problems (and you assume it’s perimenopause!)
And I also want the public to know that it’s not enough for your doctor to say “Your thyroid tests were normal.” You need to know what tests were done, what were the test results, and what levels does the doctor believe are “normal.” Because we have millions of people who are in a thyroid limbo — some doctors would classify them as having thyroid disease worth treating, but others would say they have no problem. And the lab reports say the test results are “normal.” So people who have thyroid conditions are being told they are normal, and left to suffer. It’s not fair, but we simply can not assume that all doctors know this, because they don’t. So WE as patients have to learn as much as we can, and advocate for ourselves, in order to get proper thyroid diagnosis and treatment.
Thank you so much for taking the time to speak with us, Mary, and for all that you do to raise awareness for thyroid conditions!
Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now: