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:
Get your community involved! Finish this tweet (or Facebook status or both if you’d like):
My health in one word is: _____.
Which adjective fits best to describe your health?
Feel free to use this as a discussion in your community or as a jumping off point for a quick blog post today.
Do you think you can describe your health in one word? Would you make up a new word to describe your health? (One of my favorite things to do is create new words – especially mush-words or portmanteaus.)
So go ahead – what’s your health in one word? Link in the comments or add the hashtag #wegohealth
The best tweets will make it into the Finish This Tweet Hall of Fame.
Amanda: Dear Thyroid is a different kind of health community and it says so right in the first line of the About page. What made you decide to bring your crusade online?
Katie Schwartz: Being a writer, I have an ongoing love affair with words. I believe that each person (when they are ready) must tell their story in their own words. Our slogan is “Healing our thyroids one letter at a time”. We mean that literally and metaphorically. Write and submit as many letters as it takes. Join our conversations in comments, and on our chat boards.
If we don’t tell our stories, we are doing our respective diseases a huge disservice. We learn from each other. (By we, I mean the collective we.) We tell the medical community what’s not working. We bridge the gap between families and patients. We experience a degree of healing through the realization that someone else has gone through exactly what we have.
To quote Joanna Isbill “Dear Thyroid™ is changing the way we talk about thyroid disease and cancer. We are starting a new conversation using YOUR words.”
Words are the key to all doors, in my opinion. Our community has written hundreds of thousands of powerful words, humorously, irreverently, angrily, sadly and happily. And always, always honestly.
A: What inspired you to create this unique community?
KS: Providing a literary outlet for our community to come together, and write their story on their terms, in as many ways as they wish. That and a desperate, burning passion for change. We deserve better. Too many doctors treat thyroid disease like a ‘no brainer’, akin to the flu. We empower each other, to become our own patient advocates, to change the way we communicate with our doctors, our families, our friends and each other. We have guest bloggers, some are doctors, others are health advocates, or nutrition experts.
@BigGirlFeats said the best thing I’ve heard in a long time regarding thyroid cancer “That it’s an “easy” cancer it’s the best kind!” She went on to say “Ok, than YOU take it for me!!”
How dare any doctor tell patients how lucky they are to have this fabulous cancer?! Package it in a Tiffany box; Cancer is cancer, is cancer. Period!
Too many doctors marginalize thyroid autoimmune diseases. They barely explain what it is or what it does. Few of us walk out of the doctor’s office knowing what a thyroid is, even AFTER diagnosis! If left untreated or mistreated, this disease can kill you. Over 59MM people have a thyroid condition and over 20MM don’t know it. This is a pandemic issue with little funding, awareness or education. Most people don’t know where their thyroid is located, much less the power it has over a person’s mind and body. Become your own patient advocate. We provide a lot of resources.
As a few of our community members said: “Treat the patient, not the chart!” (Jill) “Why must I fight for normality?” (Amy). “Thyroid disease leads to brain drain” (Bonnie). “Wading through this crap to live!” (Linda).
That and more inspires the drive to do more, more, more.
A: What has been your proudest moment as a health activist?
KS: There have been so many. One that I recall off the top of my head was with a woman who wanted support, but wasn’t ready to write a letter. I asked her if she’d be comfortable emailing with me. She was. Over the course of a few months, on her own, she submitted a letter. I was so proud of her because I knew what a challenge it was for her to share that letter. We chatted during the entire process, from the moment it was published and while she was receiving comments. At the end of the day, she said “I found my voice.” She added that she’d never felt the level of support that she received from our community and how indescribable the experience was. She doesn’t know this, but I sobbed tears of joy for her.
A: The most challenging one?
KS: In the beginning a few folks took umbrage with the uncensored language, lack of religion and pin-ups that we pair with each literary piece. My goal was to engage, and make sure they understood why I made those choices for the brand, not to change their minds. I wanted them to feel heard because I did hear them. What was so great was that a few of those folks ultimately became community members. They understood, on a very deep level why Dear Thyroid was different and how that difference might be of value to them.
A: What do you wish the general public knew about the thyroid and thyroid conditions?
KS: Thyroid conditions are not an excuse to be fat! Conversely, people who look anorectic might have a thyroid condition. Stop assuming. Thyroid diseases and thyroid cancers are very serious health issues, psychiatrically and physically. Thyroid disease and thyroid cancer can kill you. Treat people the way you want to be treated. Don’t judge and don’t mock a disease you know nothing about. Think about what you want to say before saying it.
KS: Writing, rinse and repeat. I’m also reinventing myself. Reading – I’m a Beat Literature junky. Collecting – vintage tchotchkes and perfumes. Rebuilding – relationships. Adding new cards to my “Guilt Rolodex” and maintaining a high level of neuroses.
It’s a brand new year, what is in store for the future Dear Thyroid and thyroid awareness overall? We are SO EXCITED ABOUT THIS YEAR! All caps and an exclamation point, word! New partnerships are in the mix, becoming a fully fledged non-profit, launching our family outreach and support program, and doing everything we can to continue our unique approach to awareness, education and support.
Thank you so much for taking the time to interview Dear Thyroid. We very much appreciate WeGoHealth.com and the good work you do.
Special thanks to Katie for sharing her story with me. I eagerly await more of her impending advocacy endeavors and hope to be able to feature more of her and her community’s work on the blog!
Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now:
In honor of January’s Thyroid Awareness Month, I had the awesome opportunity to interview Katie Schwartz, Health Activist mastermind behind the community Dear Thyroid™. Like her community, Katie is fiercely dedicated to being honest and real about life and thyroid conditions. Her responses to my questions are saturated with rich, fun language, likely due to her background as a comedy writer and fellow lover of words. In addition to being well-spoken, Katie takes a fresh approach to advocacy that is both light-hearted and content-centric. (Perhaps it’s no surprise why I’m such a fan!) Personally, I connected immediately with Dear Thyroid’s mission statement and their literary focus. It doesn’t take long to see why this community is special and why it has engaged so many. A self-proclaimed “pushy broad,” you can expect many more great things from Katie and her community in the future.
Amanda: I’m so excited to be chatting with you today Katie! Thanks so much for taking the time out to share with our community.
Katie Schwartz: Me too, Amanda! You’re passion and enthusiasm for health advocacy and WEGOHealth.com is infectious. LOVE IT, GIRL. Thanks so much for your time and the opportunity to talk about Dear Thyroid™
A: First off – tell us a little bit about your background and why you became an advocate for thyroid diseases and thyroid cancers.
KS: I’m a comedy writer. Life, pre-sickness, was fantastic. I appreciated my life, family, friends, and valued time; mine and others. I knew who I was and where I came from. I didn’t need an internal or external makeover. I didn’t need a disease to teach me anything. Suffice it to say, I don’t believe that we create disease or invite it into our lives. Disease just is. When it happens, life as you know it is forever changed, for yourself, your family and friends.
Though I was diagnosed with Graves’ and Graves’ eye disease 4 years ago, I’ve had it for at least 10-years. Unbeknownst to me, it was genetic.
Unfortunately, I almost died from thyrotoxicosis and thyroid psychoses. My mother and sister intervened to save my life.
Upon diagnosis, I wrote scathing hate letters to my thyroid. I wondered if anyone wanted to write one too. One day, I launched a blog and invited other thyroid patients to write and submit letters to their thyroids. Within a few months, a brand, a website and a community were born.
As letters poured in from patients and survivors; I realized that elements of my story kept reflecting back to me in various degrees. Multiple misdiagnoses, mistreatment and neglect were as normal as brushing your teeth in the morning. The more I read the more heartbroken and enraged I became. These exquisite, brave and wonderful women, men and young adults had rich, full lives that were ripped away from them without forewarning or consent. Their courage to keep fighting and sharing their stories was the impetus for my unwavering determination to be part of the movement that invokes change for thyroid patients. That and I am a pushy broad. So, I’m not giving up.
A: What made you get involved in the first place?
KS: I was frustrated. I wanted to know exactly what other patients were going through, in their words. I wanted the uninterrupted, uncensored grit. I didn’t want anything sugar coated. I was frustrated by the lack of spinning and spiraling. I thought, certainly others feel this way too, right? Anger seemed to be taboo. Not that anger is an aphrodisiac or anything; I just refused to believe that I was the only one who felt angry about my disease.
Save religion and politics, anything goes on Dear Thyroid. This disease takes your mind to dangerous places and morphs your body into an unrecognizable stranger, to yourself and others. That brings up a lot of anger, frustration and sadness. We encourage everyone to write honestly. We want the good, the bad and the ugly.
A: How has Dear Thyroid evolved to take that mission to the next level? What keeps you going?
KS: As Dear Thyroid™ has grown, so have our goals. From a literary perspective, we receive poems, songs, rants, raves, love letters, hate letters, letters to doctors, and to and from families, among other literary works. Each piece is a gift, and treated with the utmost respect. Letters from families are as important as letters from patients. This disease impacts them as hard as it hits patients. In addition, we have ongoing columns about Graves’ disease, thyroid cancer, chronic illness, and a few more coming soon. We also giveaway Thyroid Awareness Bands, provide offlinelocal support, family support and Wearing My Disease on My sleeve. Recently we launched a “Thymentor” program. We sell humorous T-shirts. (To be clear, we are in the process of becoming a non-profit and we do not accept any revenue.) We also partner with other organizations and groups to support their awareness endeavors.
I am empowered and inspired every day by our community and their courage. They motivate me to do better, fight harder and challenge myself to think as far outside the box as possible, to make life better for all of us.
As for the Dear Thyroid Team, I am VERY lucky to be working alongside such extraordinary, dedicated and talented individuals. Our team members donate their invaluable time, to write columns, support community members, and forge partnerships with other organizations. They donate their time—THAT’S AMAZING. They give so much of themselves to our community. I am in awe of them and have tremendous respect and gratitude for them. Each has such a unique point of view. With a pure heart and passion for their work, they bring it.
In our Community, a recent tough topic has sparked an enlightening conversation. The inspiration for this discussion is the idea of physical pain, a side effect and sometimes a symptom of many health conditions. What if your loved ones don’t believe your pain? What do you do when others are dismissive of your pain?
Here is what a few Health Activists, many of whom talk daily about living with chronic or extreme physical pain, had to say:
Amyproposed the question and her 5 steps of advice in her blog post:
What do we do when our family or loved ones are not supportive of our illness? What can we do when we feel our pain is dismissed or not believed?
Treat them like you would like to be treated.
Share with them stories of others who deal with your health condition.
Not only is pain the body’s sign to you that something is not right, it also is a very powerful motivator. Pain’s job is to tell you to fix what is wrong, move away, avoid the painful stimulus. When this is impossible pain can become overwhelming to the system. Depression is a frequent co-morbidity of chronic pain. Even when outright depression isn’t a factor, desperation is like a shadow that follows these patients. I often find community members write in my groups or to me personally complaining that their families don’t understand. I find it really difficult to know what to say to them. I try to tell them that they are not alone. I try to help them find outlets, even if that means giving my personal email information so they have someone to vent to.
Don’t forget to support yourself. Be very patient with yourself. …Just focus on the minute by minute. Give yourself kudos for small accomplishments instead of requiring yourself to achieve major goals in order to feel that you’ve made progress.
I look upon every thing that I do that helps to easy my pain even a little as a great victory over my chronic illness. I also found that handling my responsibilities as a wife and mother in small increments gives me a sense of victory. If it takes days to clean a closet, that is okay. For when the job is done I can laugh and feel good about what I have accomplished.
But what do YOU think? Have you dealt with this in your own life? What course of action did you take to address this?
If someone in your community is struggling with being “believed” and “understood” by family members or friends – what do you tell them? Are there any resources you have to share on this topic?
Participate in our January poll! Going off our theme “New Year, New You: Setting Health Activism Goals” – we have come up with 9 great goals for Health Activists (and a space for you to write your own!). Which of these are most important to you in 2011? Which 3 top your list of 2011 Health Activist goals?
Thanks for your vote! We’ll look at the results at the end of the month and see what was most popular with the WEGO Health community of Health Activists.
Be sure to share this poll with your community! Use this short URL: http://bit.ly/dTyiN0
Tell us why you chose the 3 you did – leave a comment!