Here at WEGO Health we spend a lot of time talking to people with serious health conditions and the natural consequence of that is that sometimes, we lose friends and partners along the way. This morning we got an email from the Sickle Cell Disease community letting us know that a long-time member of WEGO Health, Phyllis Zachery-Thomas, had passed away. Phyllis wasn’t just the founder of the SCD Soldier Network; she was a passionate, energetic, and warm friend who inspired all of us with her work and her dedication to her community. She was also one of the Health Activists that we’ve had the good fortune to meet in person; when Phyllis drove from Atlanta to Boston to attend our Health Activist meet-up in 2010, she became part of WEGO Health’s family forever. It’s a sad day when you lose someone, but WEGO Health is honored to have spent time with Phyllis and to have been witness to her work. Today, we want to honor her dedication to Health Activism and what Phyllis has brought to the Health Activist community:
founded the 501 (c)3 non-profit organization SCD Soldier Network, Inc., with the mission to support and mobilize the sickle cell community through the establishment of a national registry of volunteers and trained sickle cell advocates
received the Sickle Cell Disease Association of America’s 2010 Mary H Hunter Patient Advocate Award
co-authored Sickle Cell Disease 100 Years Later, an account of patients and families dealing with sickle cell disease
connected with the online sickle cell disease community through her blog, Twitter, and Facebook pages
was an inspiration to countless new Sickle Cell Disease Health Activists looking for a way to get involved
Read about Phyllis in her own words through her WEGO Health Spotlight Interview and through her video presence. Did Phyllis touch your life? Share your experiences and thoughts here and send your thoughts to the Sickle Cell Disease community.
It came to me as no surprise that many Health Activists are already on Google+ and braving the first portion of confusing adaptation to dig in an learn how they can latch on and really take advantage of possible opportunities therein. Health Activists are experts at communicating and often among the earliest of early adopters. We love social and we love sharing resources – enter Google+.
Here’s why I think Health Activists could really benefit from using G+ and a few changes or adjustments I’d like to see made to better enable their user experiences here.
Benefits of G+ for Health Activists:
Usability! Once you get over the arguably steep learning curve, G+ is easy to use. You can drag and drop, +1 (Google’s version of the Like), upload photos, videos, and comment on others’ posts in a snap. Everything is the same size and there aren’t awkward threaded boxes for you to figure out.
You can Edit. This is a huge one for me. There is no – “oh no I posted too fast – delete! Re-post” dance that many of us experience on Facebook. It’s maddening to catch a spelling error and be unable to fix it right away. Health Activists like to get things right and accurate – this is possible and easy.
Notifications are in your Gmail. Gmail is right there – many Health Activists email their community members and rely on long-form communication. Your Gmail and G+ communities are linked. That means only one tab needs to be open and you’re just a click away from re-engaging in a post conversation on G+.
Hangouts. I haven’t tried them yet, myself. But there is a huge potential here. For those Health Activists that are home due to chronic pain, fatigue, treatment regimens, or because they are caregivers or busy parents – this is a way to get face-to-face with up to 10 people in your community. Instead of the sometimes-awkward one-on-one Video Chat (you can still do that, though) – you can meet with a whole team of folks. Think of the possibilities: it’s the closest facsimile we’ve ever had to an in-person support group. Huge.
Circles - one for each “you.” In the past, many have written about the new way that Facebook Sign In has made it virtually impossible for you to keep your Health-you and you-you separate. As I’ve heard from many Health Activists, sometimes sharing personal health details is something you only want to do with your community members. Some Health Activists get more personal with their blog-readers than they do their own friends and family. With Facebook – it’s a complicated process to try to separate all the versions of conversations you want to have. G+ makes that a cinch. For those of us who have numerous Facebooks, Twitters, and blogs (myself included) this is an incredible step in the right direction. You can now decide who you’re sharing that clinical trial link, treatment news, or how you’re feeling with. And, conversely – you can keep the more personal pieces you may not want to share with your health community – relegated to your friends. This is possible on Facebook and Twitter but to create Groups or Lists there is a complicated search and add feature that involves lots of click and redirecting – G+ seems to be designed for finding people and dropping them into a Circle instantly. [Jump to keep reading!]
1. to make known; reveal or uncover: to disclose a secret
2. to cause to appear; allow to be seen; lay open to view: In spring the violets disclose their fragrant petals.
The word “disclose” was first used right around the time of The Renaissance, an era of rebirth: artistic expression, intellectual transformation, and scientific advances. A time when people rose from the darkness of the past centuries and began opening themselves up to a new way of life. Now, whether this is a more romanticized version of what actually happened or not – the idea of a Renaissance from the Dark Ages fits perfectly with our March theme of Health Disclosure (and the upcoming first day of Spring!).
Once you open yourself up, share what you’re going through, and begin to connect with what’s going on around you – you are, in effect, being reborn. This, I would guess, is what many Health Activists felt the very first time they blogged about their condition, talked with fellow patients about common symptoms, or got that first “thank you, you’ve helped me so much” from a member of their communities.
For this month’s Health Activist Blog Carnival, let’s share our disclosure stories, our Health Activist Renaissance moments. Why did you first participate in a forum, support group, or blog? How did it feel to take ownership of your condition and begin to share with others? Was it a Renaissance of sorts or something less dramatic? How has your disclosure shaped your life since?
Write a post telling your disclosure story and why you would encourage others in your community to join you on the other side of disclosure. You could share how your online community helped you be more open, revealing more of yourself and your life. Or how your community has allowed a part of your to be seen, caused something to appear, or presented you open to view, perhaps? How has disclosing in your personal life influenced you?
Why not start with the completing the sentence “I disclose because…” or “I disclosed and…” see where the exercise takes you? If you’re feeling particularly like a spring violet – why not try a video entry this month? And, because we’re talking about the Renaissance so much – if you’re feeling particularly creative – you can make some form of art or poem that tells your disclosure story.
As always, once you’ve written, created, or recorded your entry – share with us! Either here in the comments section or as a link/upload in this discussion in the Health Bloggers Group. At the end of March we will highlight some of your stories and be a lot closer to our goal of creating valuable “disclosure” resources, tips, and advice for Health Activists.
Here’s our HABC graphic for you to add to your post if you’d like:
You were all so creative with February’s HABC – I can’t wait to see what you’ll come up with this month!
To tell or not to tell – that is the question. If you’re living with a chronic condition, have health symptoms, or are undergoing treatment of any sort – disclosing that information to others has been a topic that’s crossed your mind. Who do I tell and how much do I say? When is the right time to bring this up? Is this TMI? Will this change how people think of me? Will talking about my condition influence my work life, love life, and family life? How can I share what I’m going through with people I care about without worrying them? How do I ask for what I need?
This topic proposes so many tough questions it can be overwhelming. But fear not – these are the questions Health Activists and empowered patients have already run into. A topic that Health Activists truly have the best, most valuableperspective on (in my opinion!). If you’ve been a patient and now lead or participate in a health community – you have important things to say. It’s our hope that you will take this month to share those answers, stories, and experiences that helped you decide to tell or not to tell.
Is your health-cat out of the bag? Is your health-cat still waiting for the right time to come out? Would you rather keep it at home safe and sound? We’ll talk about all aspects of disclosure this month and give you lots of blog-fodder and conversation starters for your community.
Already written (or vlogged) on this topic? Now’s the chance to share what you’ve said in the past and repurpose that content to inspire other Health Activists. Got tips for what to do and what not to do? We want to collect all of your pros and cons and create resources for other Health Activists of the past, present, and future. We’ll need your help, but we know you’ll be great!
Join us – make March your Health Disclosure Month too! If you’ve been waiting to come out about your health condition – now might be a good time to do that (once you get some tips from Health Activists, perhaps?). We hope that no matter where you are with disclosure, you’ll share that important, challenging journey with us and with your communities so your experience can help others. And as always – be sure to check back here all month for new ideas, posts, and activities to get your disclosure story out in the open or safely tucked away until you’re ready.
Earlier this month, we asked you to think about how your condition influences your relationships and how you really feel about that. We received a lot of responses – making me realize just how important this topic is to Health Activists. The challenge of relationships is, go figure, not made any easier by adding the challenge of living with a chronic health condition.
Let’s take a peak at the results and see how people voted:
How you feel about dealing with your chronic condition and relationships. (Click to enlarge)
As you can see, the top results demonstrate that struggle that I mentioned back when I explained our February Theme. Conflict! The inherent difficulty that comes with having a good relationship is possibly made even more difficult by adding a chronic condition to the mix. The work involved in balancing, handling, and understanding both at once isn’t easy either. The number one response to our poll question was that you feel “Burdened; sometimes it’s a lot of weight to carry.“The second most popular response was “Conflicted, there is so much going on.” Particularly for those waiting for diagnosis confirmation, new treatments, and the daily regimen involved with managing chronic conditions (or pain) – being overwhelmed by everything makes sense. Sometimes when a lot is happening, the hardest part is focusing on one thing and being decisive. But, at least, our third most popular response is slightly more optimistic, making light of the hand we’ve been dealt, feeling “Like being entrusted with an epic quest; this is a challenge.”
What I found most interesting were the write-ins for our “Other” option. Here are a few comments that people shared:
“Bored! I get tired of explaining and people not get it.”
“Frustrated. No end in sight!”
“Apprehensive, because I don’t know how someone new will respond.”
“I feel positive thinking is the only way to battle and overcome this problem!”
“Nobody gets it and that’s ok.”
Do you agree with these comments?
This has been an important exercise – but we can’t end on a note of uncertainty or stay in that state of conflict. So let’s look at what we have here. An opportunity to pause and see there is common ground here, across conditions. The list of chronic conditions is long and diverse, and yet, this poll shows that people of different conditions feel pretty similarly. As commenter Jay said, we “need to add “All of the above” as, at some point, I’m sure everyone feels every one of the options.”
Something I’ve heard Health Activists say is that they are relieved, blessed, glad to have their communities because finally they know (and feel) that they are not alone. They, now, know people who really get it, who understand. And, with the internet, they now have access to these other people who can relate. The online space has truly offered something wonderful for those who may live with a rare condition, may live far from in-person support groups, or may not be able to leave home. That’s huge. It is why support networks, health blogs, and forums have become so popular. And while you may not need one more relationship to add to your lives – the relationship between you and your community is an especially unique and beneficial one to nurture.
Why not bring back this topic to your community and see what others think? Sometimes putting feelings into words (or quirky analogies) alleviates them. What do you think your community would select as their most prevalent feeling toward dealing with their condition and relationships? Join the discussion here!
I’d planned to fold my hands and participate only with my eyes and mind during Pharma’s first foray into the world of the mysterious, often untamed Twitter chat (#Rxsave). But after @AstraZenecaUS’s first question: “What is best way to increase awareness of prescription savings programs?” – how could I not jump in?
A pervading answer to this important question was – educate those who reach patients: patient advocates, e-patients, and Health Activists! In order to do this, of course, Pharma must commit to presenting Health Activists with helpful boundaries: what they can and cannot say, what language to use, and be crystal clear about the message they want to communicate.
While many Health Activists are of the non-conformist sort (free-thinkers who have strong opinions they will most definitely share!) – they are also fiercely dedicated to helping others in any way they can. That is why I know they would abide by any of these to-be-established boundaries that Pharma would hypothetically construct (with some inevitable hand-binding by the FDA). I know Health Activists who cannot wait to share even the most minute “a-ha” moment they come to when finally seeking insight into the labyrinthian world of Pharma and regulations. Trust me, you can trust them.
As Phil (@PhilBaumann) mentioned in his important blog post, “But in future chats, the message of the chat shouldn’t be Social Media. The message should be the person who needs to be heard.” Phil is completely correct – social media junkies are great – but we need to get the people who will benefit from the actual prescription savings (and education about adherence, etc) to have a voice. Those who could really use the prescription savings AZ is working to promote. But as my colleague Mandy (@mandylipka) mentioned, “We have to start with the power social media users, the patient advocates and activists, and this will buy Pharma time to get its act together. Pharma is the youngest in this space but is the one that hopefully will benefit the most. But we are not there yet.”
A question that stuck out to me was “How can we reach people who do not use social media, who are of older or less affluent demographics?” How can Pharma get through to them about these new savings programs (or any other messages they need to send)? My unelaborate answer to that is: mobile (apps and text messages) and print for doctor’s offices and support groups. An idea that I loved, is to educate caregivers – they are “the sandwich generation” (quote by @ncoaging). Caregivers are able to educate both the older and younger generations that they care for. @Noaging suggested reaching caregivers through employer benefit programs.
And we can’t yet discount those old dusty boxes, our televisions. With television ads comes the need to speak in a language lots of people can understand. Health literacy advocates had a soft, but integral perspective to add last night. Pharma must consider those who cannot comprehend their jargon but who could truly use those Rx savings. This can be accomplished, again, through awareness and education.
And this is where I started my post. Health Activists! Harbingers of those two principles and bastions of passion for helping others. Smart, early-adopters who may know their way around a hashtag or two but still foster the good old-fashioned desire to help others. A desire that won’t be silenced – despite even the most complex ISIs (Important Safety Information) and regulatory restrictions.
I commend AstraZeneca – someone has to “go first.” And, (I’m repurposing one of my favorite quotes from Health Activist Wheelchair Kamikaze) we cannot forget that the FDA still has Pharma “by the naughty bits.” As commenters on the ePharma conference said – we’re all waiting impatiently (and, honestly, with a bit of that “air out of tires” sound – whoooosh of disappointment) for their “ruling” on where Pharma can go from here.
Lastly – a shout-out to my friend Alicia Staley for, basically single-handedly moderating and leading us all in the #Rxsave chat. She somehow kept up in real time, Retweeted all of @AstraZenecaUS’s questions, and offered brilliant points of her own as a cancer survivor and Health Activist.
But what do you think? What is your take on the #Rxsave chat and, maybe more importantly, Pharma’s foray into social media? How can Health Activists educate their communities about prescriptions?
(Check out the whole chat transcript here if you want to catch all the great discussion)
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:
Her Mission Statement is a testament to her power as an advocate and to her reach as an inspirational survivor:
“As a Health Activist, I will work tirelessly to motivate, educate, and inspire others in the cancer communities to achieve their best health. By sharing my personal experiences with others facing a cancer diagnosis, I will do my best to improve their treatment and survivorship experiences. I will reach out to all cancer community partners including health care providers, pharma companies, and medical institutions to ensure everyone experiencing a life touched by cancer will always have the best resources and support available to them. Cancer can’t beat a Community!”
This month, we’re focusing on setting Health Activist goals, and helping set the stage for our success and impact as advocates in 2011. Take a look at Alicia’s post and think about creating your own Mission Statement. If you decide to make a statement, please leave a link to your post in the comments section so we can check it out and spotlight YOU!
Last year (well, last month!) we asked you what 10 things you liked best about 2010 and you reported back with awesome recaps. You reminded us of your best posts, big milestones, and favorites from your past year in Health Activism.
Check out a few highlights:
Kelly remembered this milestone fondly: “1) American College of Rheumatology Scientific Meeting. Attending the weeklong meeting in Atlanta was a milestone for me, for my blog, and for the RA community. This was the first time a patient attended the meetings as press. However, the week itself was also full of milestones that I cannot easily summarize. There was one special blog post to describe how it affected my perspective: American College of Rheumatology Annual Meeting 2010 and a little video telling the highlights: Video: Thoughts from American College of Rheumatology (ACR) 2010.”
Janeen‘s #2 of 2010 was: “2. All of the wonderful and moving videos from the Food Allergy Initiative : There is no better way to get your point across than with a moving video that shows everything you are feeling. These videos are truly valuable. So is all the work that FAI does to try to find a cure.”
Amy was proud of “1. The creation of the Mental Health and Social Media Chat on Twitter. (#mhsm) In the beginning of February of 2010, (February 9, 2010 to be exact) I launched, in a solo effort, the #mhsm chat on Twitter. It has continued on every Tuesday evening, now at 9pm Eastern (with only one exception) since. The community has grown and been a great source of conversation, brainstorming, and awareness efforts.”
Welcome to 2011, it’s going to be the best year of Health Activism yet! (And that’s a pretty bold statement considering how amazing 2010 was.) I hope you will consider this very blog post your introduction to the new and improved WEGOblog. Please make yourself at home, take off your coat, stay awhile – we have an exciting array of posts to offer you this year. There will be a variety of: in-house entertainment, take-aways, activities, information, media, and more. We catch up on new trends and create some of our own. There will be both familiar faces and new ones. New friendships will be formed and new ideas will be generated.
The first offering made by our WEGOblog (we will share it, you and I) is that each month will have its own theme! You can think of it like a month-long theme party but without the time-intensive legwork involved in preparing the perfect costume (and sadly, without the delicious refreshments). Come as you are – the theme is guaranteed to be both fun and relevant to your Health Activism journey – no matter if you’re brand new to the game or a seasoned veteran. There will be lots to think about and the theme itself is something you can feel free to take back to your own communities as a way to engage your readers, members, and friends each and every month!
In honor of January and its implicit opportunity for new beginnings (whether theoretical or actual), our very first theme-month is aptly named “New Year, New You: Setting Health Activism Goals.” We will celebrate what is best about you and your community (don’t take the phrase “new you” too literally – we like you just as you are) and make it even better. We will plan together, brainstorm, analyze, dream (it’s January – sky’s the limit on our 2011s!), and spend some time mapping our impending years in Health Activism. Hopefully the holidays have you refreshed and open-minded for the brand new year – it’s going to be awesome.
So be sure to look to this WEGOblog for all things Health Activism and check back often – we’ll be updating good and often!
Right now – why not share your resolutions in the comments? If you’ve written about 2011 or what you’ve got planned in your blog or community – let us know we’d love to read it and help share it!