How did the idea for Walk Your A.S. Off come to be?

I saw this video http://www.youtube.com/watch?v=aUaInS6HIGo that shows how much our chances of many health conditions are greatly reduced if we simply walked for 30 minutes a day. It’s a very powerful video. Then I started speaking with the Arthritis Foundation’s Rocky Mountain Office about being a part of their speaker’s bureau.

 

For the first time in over 9 years of having lived with ankylosing spondylitis I really heard the message that we have to move. It is a difficult concept to embrace since moving very often equals pain for someone living with chronic illness and pain. I then realized that if after all this time I hadn’t heard the message then perhaps others hadn’t either.

 

So I started thinking about how to get not only myself to start moving more but people in my community too. That is when the catchy phrase came to mind. It’s catchy and kitschy and I thought with a cute logo we could have some fun and do some good for ourselves and maybe raise some awareness at the same time. Walk Your A.S. Off was then born! I decided to keep it simple and just create the project via Facebook & Twitter with some more information available on my blog. No registration or fundraising – no reason NOT to do it.

 

The original goal was one million steps! I realized only a week in with almost 30 teams coming on board that we would have to rethink the goal. That is when two advocates of the AS community both came up with circling the globe! Michael Smith & Cookie Hopper both are credited for that great idea and we all set about making it happen. And we did it – we circled the globe in steps made in the name of ankylosing spondylitis!

What are you most excited about in the online health community or Health Activism?

I’m excited to see the new frontier of health advocacy becoming a more main stream concept. It’s still a bit of the Wild West out here in our communities but I think with the help of organizations like WEGO Health supporting our efforts, corporate America and big pharma are really seeing the power of the patient advocate. Successful grassroots efforts and initiatives are huge in our ability to show we are serious and professional in what we are doing and most certainly we are not to be underestimated!

 

How can other Health Activists help raise awareness about Ankylosing Spondylitis?

Raising awareness is difficult to define. Some see it as a very local, making sure your family and friends know what the disease is that you live with. Others work to do wonderful disease specific support projects and work for and within the community. I tend to think that to really be successful in raising the knowledge about what AS is and frankly that it even exists, that we have to do projects and initiatives that are of interest outside of our communities and the people who know about AS intimately.

 

We can talk to ourselves until we’re blue in the face about the need for “the world” to understand what a life with AS entails but we’re speaking to the choir. Find something you love to do and then tie it in with advocating for better knowledge and research for a cure for ankylosing spondylitis or whatever disease you specifically wish to advocate for. Once you do that, people will listen. They will be curious and your heart will be in it.

 

If you just talk about how horrible the disease is people tune out, it’s unfortunate but it is what it is. Add YOU to the mix and have the advocacy be only part of who and what you do. When your heart is truly in what you do people take notice, they are curious, and they will want to hear about your passion and as a byproduct of that, they will learn about the message behind your reason for sharing.

 

Step outside the “advocate mold” and do something unique.

1. The writing itself. You loved: the challenge of writing , the opportunity to be creative, the predetermined structure to write every day, and being able to look back and say – I accomplished this! We loved seeing how you interpreted the prompts, stretched yourselves as writers, and interacted with your readers.
2. Meeting new bloggers. One of our hopes with HAWMC was that bloggers would be able to get to know new leaders online and be able to network and connect as writers. So we’re really psyched that this happened for many participants! Many people’s favorite part was being able to find new blogs to read, new bloggers to admire/read, and a way to connect in an easy way.

HAWMC is a total win-win!

Speaking of wins…

Here are our 2012 Superlatives that were announced in our chat.

Click the badge to visit the winning blogger or blog post

Thanks to everyone who participated in HAWMC and shared their work with us all month long. We encourage you to keep us in the loop when you’re doing projects in your health community by sharing on our Facebook page. It’s a great way to keep connecting with fellow Health Activists.

Here’s what they shared with us:

Tell Health Activists a little about Cystic Life and the mission behind the community.

CysticLife is an organization that works to positively impact the Cystic Fibrosis community. CysticLife operates both online and offline. Online, our main focus is CysticLife.org, a social network for the CF community, and our social media channels, both Facebook and Twitter. Offline, we produce printed materials for patients and families that we distribute to CF Centers across the country; provide activity, medical, and educational grants to the CF community for CF-related expenses; provide a fitness coaching program, CFit, for CF patients; and work to raise awareness about CF in the general community.

What do you see as the biggest myth or misconception around Cystic Fibrosis that you’d like to correct?

Cystic Fibrosis (CF) is no longer a childhood disease. While this may have been true 20 years ago, it’s no longer true today. Nearly half of the people living with CF in the United States are over the age of 18. Also, according to the most recent data, many are graduating from college, have full-time careers and enjoying life with a spouse or live-in partner. That however does not mean that we can become comfortable with our fantastic progress so far. Until we have a cure, or until we as a community can expect to live a long and normal life, we must never stop raising awareness

What do you want Health Activists to know about Cystic Fibrosis?

Cystic Fibrosis (CF) is a “lifestyle disease”. Many people are under the impression that CF is a lung disease, but this however is not true. CF is a disease of the cells within our body. Because of a mutated gene our cells do not properly exchange sodium and chloride thus causing many issues within our lungs. This faulty exchange leads to a thick and sticky mucus build-up which then leads to infections which leads to inflammation which leads to more mucus build-up – it’s quite the cycle!! The lung is not the only organ impacted however. CF can negatively impact the pancreas, kidneys, liver, and skin as well as bones, joints, and ligaments. As you can see, the effects of CF are far-reaching and not just confined to the lungs. But why do we refer to it as a “lifestyle disease”? Simply put – it affects our lifestyle and the choices we make each and every day as well as the lives of those around us. Many CF patients spend up to 4 hours a day doing various treatments and activities that they would not be doing without this disease. When you devote nearly 30 hours a week to improve your health, we’d hardly call that “just a lung disease”! CF demands that we adjust our lives and devote much time to our health if we expect to live a “normal” life.

What awareness event, program, etc. would you like to share with the Health Activist community and their community members?

CysticLife is currently working on a short film, Living Xtreme: Beyond Cystic Fibrosis. The film, being co-produced by CysticLife, The Cystic Fibrosis Lifestyle Foundation and The Essential Image Source Foundation, will highlight the extreme hobbies and lifestyles of people with Cystic Fibrosis. Through this film, we will show members of the Cystic Fibrosis community, as well as the general public, how exciting, active, and rich life with Cystic Fibrosis can be. In addition, we are working on a full length documentary, which will build upon the short film. For more information, go to www.livingxtreme.org.

Thanks to Amanda Sharpe, Ronnie Sharpe, and the rest of the folks at CysticLife who shared this great information with us.  You can check them out at CysticLife.org or on Twitter @CysticLife!

Yesterday kicked off National Women’s Health Week – a week dedicated to empowering women to make their health a top priority. Sounds like something in line with Health Activism, no?

NWHW is a health observance coordinated by the US Dept of Health & Human Services – and aims to bring together communities, business, government, health organizations, and other groups to promote women’s health. And, here at WEGO Health – when we hear “communities” – we think of online health communities. So we’re going to focus on how we, as Health Activists, can bring women’s health topics to our health communities and discuss how we can help raise awareness about women’s health causes.

The official NWHW theme is “It’s Your Time” and, in addition to helping women make their health a priority – the week will focus on improving physical and mental health as well as lowering one’s risk for certain diseases.

So join us tomorrow for a Health Activist Tweetchat all about women’s health. (We’ll have a Men’s Health HAchat in June – so don’t stay tuned!) We’ll share what topics we think are most important with regards to “women’s health” and what issues you think are discussed and which don’t get nearly enough attention. No matter what your health-focus is – this chat will be a great way to connect across conditions and team up to raise awareness, talk prevention, healthy living, and other topics.

As you may have guessed – the overwhelming majority of Health Activists are women (a rare and awesome thing for women to be the clear leaders on) so your unique perspective is huge and can go a long way in helping the women in your life (online and off) to put themselves and their own health first.

Join us Tuesday, May15th at 3pm ET: http://tweetchat.com/room/HAchat#

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you – only you know yourself and what you’re going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear – we’re doing something about it.

Let’s play off of that idea by sharing what is real, true, and correct – and labeling ourselves with that instead.

This week we’ll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we invite you to do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condtion, health community, healthcare, or patients in general.
Now – share your photo! Add it to our Facebook wall and have your friends/followers “Like” it. The photo will the most “Likes” will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here’s what they look like).
Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We’ll post our team Mugshots this week so you get the idea – and then you can start posting your pics next Monday, May 21st and having your friends “like” it. We’ll pick the winner on May 28th.

Check out some WEGO Health team Mugshots on our Facebook page »

Did you know that May 19^th-20^th marks a 47-hour period known as World Autoimmune Arthritis Day? Health Activists all over the world will be taking part in an international awareness effort and there are plenty of ways for you to get involved (whether you have arthritis or not!).

Tiffany Westrich, founder/CEO of the International Autoimmune Arthritis Movement (IAAM) and Event Coordinator of World Autoimmune Arthritis Day was gracious enough to answer a few questions for us on the importance of WAAD and how YOU can get involved.  Here’s what she told us»

First, thank you for mentioning WAAD, this is such an exciting time for Autoimmune Arthritis!  As of today we are listed on over 20 Health Calendars around the world and there are 16 nonprofits who have signed on to support this event, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand and the International Still’s Disease Foundation, amongst others.  Also, EULAR (the European version of the ACR) has contacted IAAM, due to our powerful awareness efforts and everything we’ve done leading up to WAAD, to help them with World Arthritis Day in October!  We just added the WAD logo to the WAAD Facebook page and announced their support and that WAAD will be added to their site and IAAM helping to bring more Autoimmune Arthritis angles to their event.  We also have 8 Feature Stories that will began launching Friday the 11th.

WEGO Health: What myth or misconception do you most want to correct around Autoimmune Arthritis?

This is two-fold.  The first is to break the stigma surrounding the word ‘arthritis’, which literally means joint inflammation.  These diseases are primary joint diseases as a major part of the illness but because they are autoimmune they affect the whole body, including any joint, connective and soft tissues and sometimes organs.  While many have tried to raise awareness in the past, IAAM, the hosts and coordinators of World Autoimmune Arthritis Day, takes a different approach.  The philosophy is to “Differentiate Your Arthritis”.

Differentiate Your Arthritis

Don’t rename it, reclaim it.

Define it and differentiate it from the norm.

Then they’ll understand.

So the philosophy is to stop saying “arthritis” in its singular form and instead describe it to differentiate it.  Degenerative Arthritis involves only the joints and is caused by wearing away of the cartilage.  Autoimmune Arthritis is also major joint but adds on other symptoms because it’s caused inflammation spurred by the body’s cells attacking one another.

The second involves an understanding of the term “Autoimmune Arthritis” itself.  Autoimmune Arthritis isn’t a singular disease; it’s a group of the most common joint diseases that are a result of an autoimmune response.  There are many diseases that are autoimmune that CAN have joint involvement but they are not the most common forms of arthritis (joint inflammation).  It is very important to note this core group that consists of Psoriatic Arthritis, Systemic Lupus Eryothematosis, Rheumatoid Arthritis, Ankylosing Spondylitis, Still’s Disease, Primary Sjogren’s Syndrome, Juvenile Arthritis, Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease/Undifferentiated Spondyloarthropathy was designed as the core Autoimmune Arthritis diseases mainly because of their heavy involvement of arthritis (joint inflammation) in over 90% of cases.

WEGO Health: Why is this important to understand?

Before categorizing Autoimmune Arthritis and Degenerative Arthritis it was most often seen published that “Osteoarthritis and Rheumatoid Arthritis are the most common forms of arthritis”.  This statement is one of the contributors to the misunderstanding.  How?  Most people know that Osteoarthritis, most often referred to as simply ‘arthritis’ is a joint condition.  When Rheumatoid Arthritis is consistently mentioned alongside Osteoarthritis and clearly states they are the “most common forms of joint inflammation”, what else is the general public geared to think other than they are both joint-only conditions?   What IAAM has done is researched medical journals and pulled the term “Autoimmune Arthritis” from past studies that described certain types of joint diseases that were autoimmune.  By selecting only the MOST COMMON arthritis diseases, or those that had major joint involvement as a serious, common symptom, we successfully expand the group of “most common arthritis diseases” to 10.  By describing 9 of them as autoimmune and the other as degenerative, we now have a platform to understand the differences.

As mentioned previously, there are several autoimmune diseases that can involve joint pain, but the core of their illness is not joint-related.  These we consider “related diseases”.

WEGO Health: What are you excited about most for World Autoimmune Arthritis Day?

The most exciting thing about the event has to be watching the world of advocates and nonprofits from around the world coming together under one ‘virtual roof’.  There are 16 nonprofits from the US, Canada the UK and New Zealand who signed up to participate and 20 Patient Expert Presenters and Live Chat Hosts representing each disease and several countries.  Add to that mix the patients and their supporters who are registered not only from the countries mentioned above but also from Australia, Guam, Africa, Ireland, Scotland, Japan, Brazil, Pakastan, and Italy (thus far!).  It is the first time in history that the whole world of Autoimmune Arthritis can meet in the same place for a 47 hour event- as stated in the article on Yahoo! News, its “groundbreaking”.

WEGO Health: What can other Health Activists do to get involved?

WAAD is covering NINETEEN subjects that were submitted as the most important to those affected (by surveying the WAAD Facebook site).  These 19 subjects were turned into presentations or live chat sessions that will be led by Patient Advocates.  We are asking our Blogger and Advocate connections to post a story before WAAD begins on the 19th of May about one of these 19 subjects, with a link to the FREE registration at www.WorldAutoimmuneArthritisDay.org .  We have already had a couple of dozen bloggers do this and it’s been just another wonderful example of how WAAD is uniting our community.

NOTE: IF the blogger or advocate can get this published by Wednesday the 16th AND do a copy/paste take away of a learning lesson from the blog and email it to tiffany@IAAMovement.org by end of day the same date, we will add their document, with their affiliation, to WAAD’s Resource Center.

This is the library of resources that will be available during WAAD for attendees to download in order to help with their diseases.  If submitted, their name/blog name/affiliation will be added to the list of Contributors that donated information to the WAAD Resource Center.  This is something that is resume worthy.  If anyone wants to submit a blog, OR if they have older material that meets one of our 19 categories and would like to turn that into a document for the Resource Center, they should email tiffany@IAAMovement.org no later than Monday the 14th.

SUBJECTS:

1. Being Your Own Self Advocate
2. Eye Involvement in Autoimmune Arthritis Diseases
3. Dental Issues in Autoimmune Arthritis Diseases
4. Fitness
5. Nutrition
6. Intimacy
7. Parenting a Child with Autoimmune Arthritis
8. Being a Parent while Having Autoimmune Arthritis
9. How to Maximize Your Healthy Time
10. Navigating Your Day with Autoimmune Arthritis (tips to make it easier)
11. Self Esteem
12. Supporting Someone with Autoimmune Arthritis
13. What I CAN Do!
14. Who Am I Now? Living with Unexpected Disability
15. Dealing with Autoimmune Arthritis in the Workplace
16. Invisibility
17. Myths
18. How to Remain Positive
19. Specific Articles about the 9 Autoimmune Arthritis Articles

Thanks to Tiffany for sharing all of this valuable information about WAAD – we hope to see tons of Health Activists getting involved.  Connect with Tiffany, IAAM, and WAAD on their website, on Twitter, and on Facebook.

Image credit: lubaib on Flickr

May is full of month full of health observances. There’s Cystic Fibrosis, Lupus, Arthritis, Lyme Disease, Women’s Health week, Food Allergy, Celiac Disease, among others.  May is also Mental Health Awareness Month.  While Mental Health often gets boxed into its own category, it is intricately related to physical health and each and every condition.  How can we talk about fibromyalgia without discussing the impact that chronic pain has on mental health?  How can we discuss lupus or celiac disease without thinking about the way forced lifestyle changes impact your psyche?  Tuesday’s Health Activist chat was one of the most riveting chats that we’ve hosted at WEGO Health.  The number of Health Activists that came together across conditions to discuss the crossover between mental health and their condition demonstrates how pervasive mental health is and that it deserves more attention in the management of physical health.

What isn’t mental health?

amanda_stand Number one point here I think is ‘Mental health is something that EVERYONE has, just like physical health’. #hachat

amygdala_101 #hachat we all have mental health, it exists on a continuum, and moves up, down, and along that continuum.

Defining mental health is both straight-forward and complicated.  It is easy to come up with a definition – mental health is one’s level of emotional, psychological and cognitive wellbeing.  Mental health is closely related to anything that affects you psychologically, including mental illness and addiction. It involves your thoughts, feelings, attitudes, and compulsions.  However, the term mental health usually conjures up images of mental illness, including depression, schizophrenia, and bipolar disorder.  But like physical health, there is a difference between wellness and illness. Everyone has some state of mental health.  Myths, misconceptions and stigma abound — but mental health affects each and every one of us.

It is easy to see how important it is to maintain good mental health when looking at co-morbidities:  amygdala_101 if your emotional needs cannot be met due to physical illness, mi can easily follow..get needs met to avoid mi! #hachat. Many Health Activists discussed the ways that Mental Health intersects with their health conditions:

brownawell MH and physical health are so intertwined, especially a chronic condition or illness. Both (MH and PH) need support! #hachat

SLEYoungLeaders: With #lupus, the odds of you developing Depression & other mental health issues is high. Seeking a therapist for help is vital #HAchat

3lainess there is a lot of anxiety and depression in breast cancer, lots of anxiety with ADD, and lots of anxiety with body image issues #hachat

Dyverse_Steele yes almost everyone I know that has hiv/aids has had mental health issues from knowing they will be taking pills forever #hachat

running4autism I am an autism mom. Special needs parents have high statistical likelihood of depression. #hachat

CornMuffinsMama Pregnancy caused my hypothyroidism which caused the PPD.I talk all the time 2 ppl about the link between thyroid/PPD. #hachat

MakeThisLookAwe: I have hypomania, anxiety, and depressive episodes as part of the mechanism of my migraines. I also have #MedicalPTSD. #HAchat

FeliciaFibro By talking about how depression commonly overlaps #fibro & that it doesn’t mean #fibro is “all in your head.” #hachat

FightingCat @wegohealth T3 #MH *is* my condition. Talk about triangle with stress and sleep #HAchat

Top Myths and Misconceptions about Mental Health:

In line with our theme this month, here are some of the top myths and misconceptions surrounding mental health:

hotelqueen @wegohealth MI = “crazy” and depression = “just a little bit sad”. Misconceptions at both ends of the spectrum #HAchat

CornMuffinsMama It’s another HUGE misconception that PTSD is just for service members returning from combat. #hachat

MakeThisLookAwe One problem with mental health & physical health, a lot of doctors will start ignoring physical symptoms once a dx of MI is given #HAchat

@CornMuffinsMama It’s also important to remember that there is no hierarchy of “better” or “worse” mental illness #HAchat

MakeThisLookAwe There needs to be less #stigma around #medication. Taking a pill to help how you feel & function does not mean you’re broken. #HAchat

researchgirlca: MI is but a piece of our lives, our communities. We are whole people with interests, etc. #HAchat

Why is everyone afraid to talk about mental health?

CornMuffinsMama Many people dont realize the connection between MH and physical health. They also don’t recognize MH issues as legit #hachat

The aforementioned myths, misconceptions and stigma prevent many from sharing their struggles with mental illness.  Even with all of these Health Activists coming out and saying how closely related mental health issues are to their other health conditions; there is still a reluctance to be open about dealing with them.  natasha_tracy Historically, mental illness was seen as a demonic force and later as a character/moral failing and that sentiment still lingers. #hachat. People are embarrassed.   Many Health Activists share very personal details about their bodies, their lives and the lives of their families are still hesitant to talk about their mental health:  running4autism I’ve been silent about it bc I do feel the stigma. Wrongly I know, I feel ashamed of my conditions. #HAchat. Others have chosen to discuss their mental health more privately, such as in closed Facebook groups.

The fact that Mental Illness is invisible makes many hesitant to open up about it. Not only is there a tendency for people to not believe in something that they cannot see, there is the added fear and stigma surrounding what Mental Illness “looks like” according to stories and mass media. Mental health shares many of the same misconceptions as other invisible illnesses. running4autism: MI is invisible, therefore ppl don’t think it’s real. We’re making it up! #hachat .You may not necessarily look sick, so others may think that you’re faking or exaggerating.  However, even with physical illness there isn’t the same explanation needed, or the same fear.  FightingCat Feel need to explain what/why to others. Don’t have to explain why with a physical illness #HAchat. According to CornMuffinsMama, Christianity adds another layer of stigma: CornMuffinsMama: within Christianity, it’s still often seen as a spiritual failing if someone has a MH issue. “U need 2 pray more” “Must b sin” #hachat. This sentiment of “you need to pray more” is quite similar to “you’re just sad, cheer up!”

Fear of blame and judgment also prevent people from opening up about mental health.  As in many other conditions, those outside of the mental health community like to play the blame game.  The myth that people living with mental illness must have done something to deserve their affliction is all too common and just as difficult to correct.  CornMuffinsMama The stigma is that you’re doing something wrong, you’ve somehow failed, you are less of a person, you’re “crazy“ #hachat.  People want to believe this myth because they are afraid.  Mental illness and the brain specifically are not well understood even within the scientific community, and blame makes it easier for a person to say – that won’t happen to me.  natasha_tracy “crazy” is just fear misspelled.#hachat

All of these factors combined mean that those with mental illness may not seek the help they need. It is important to remember that even if you’re not comfortable discussing your mental health with family and friends, there is nothing wrong with seeking help.  SLEYoungLeaders: It’s important to remember that seeking help for Mental Health issues like Depression are OKAY. It’s the RIGHT thing to do! #HAchat

How do we open up a dialogue around mental health and mental illness?

researchgirlca: I think we need to do away with the idea of mind/body. health is health. #HAchat

As always, the question becomes: how do we combat these myths? How do we get people to open up a dialogue surrounding mental health and mental illness?  As with many other health conditions, the key to combatting stigma is education.  We need to promote a more active dialogue about mental health.  Encourage others to seek help if they need it.  We need to take a more integrative approach to care and stop separating the mind and body into different categories.  Health Activists can lead the way by bringing mental health into their own writing and discussions with their community members.

natasha_tracy Stigma is combated by standing up and talking about reality. Knowledge dispels fear and thus stigma.

SLEYoungLeaders: As Health Activists we should talk freely, openly, and non-judgmentally about Mental Health & how to seek help if needed. #HAchat

pamressler: By integrating quality MH care into comprehensive care for any chronic condition would be a good start #hachat

julianna12369 Final Thoughts: What we talk about and shine a light on cannot stay stigmatized for long. Mental Health is everyone’s health! #HAchat

In order to begin a constructive conversation about mental health, you have to stop feeling guilty, stop blaming yourself, stop apologizing! Mental illness is no one’s fault, whether it resulted from trauma or from chemical imbalances in your brain.  You have to stop blaming yourself.  Blaming yourself only makes it easier for others to blame you.  Stop fearing judgment and do what you need to do in order to take care of yourself. Learn what taking care of yourself really means.

SLEYoungLeaders RT @wegohealth: I think many of us feel “guilty” for feeling “down” in some way. That is a tough thing to get past. #HAchat

julianna12369 @wegohealth I have been bipolar for over 25 years and I still apologize for longer depressive episodes. I have to stop doing that. #HAchat

MakeThisLookAwe We don’t judge someone for using crutches or insulin, but #headmeds are somehow a sign of being deficient or deformed… #stigma #HAchat –

Finally, remember that you’re not alone.  No matter the differences between each individual’s health, mental health is something that we all have in common.  As this chat demonstrated, there are countless others going through the same thing that you are, it’s just a matter of reaching out to find the help and support you need.  If the WEGO Health community is any indication of the support available in the online health community, we can safely say that the help you need is out there.

SLEYoungLeaders Final Thoughts: You’re not alone with issues on Mental Health/Illness. Seek help, encouragement, and information to better yourself. #HAchat

What is your community doing to encourage discussion of mental health and mental illness? Where do you turn to for support?  Share your thoughts by emailing us at editorial@wegohealth.com. Tune in next week for another special #HAChat in honor of National Women’s Health Week. Tuesdays, 3 PM EST.

Today is World Lupus Day and WEGO Health is decked out in orange and purple pride (pics to come)! We’ve heard from so many Lupus Health Activists that lupus awareness is fun, and we are joining in today by helping to promote education and visibility of this invisible illness.  Several Health Activists joined us for a Roundtable on lupus to debunk myths and spread the word on the most important issues to the lupus community, check out what Tiffany (@TiffanyandLupus) and Amanda (@LALupusLady) had to say:

“I found the joys of lupus. I’m learning to appreciate everything every day. It’s like a gift. There are no returns, no exchanges. So what am I going to do with this present? I can’t re-gift it, unfortunately. There are so many lessons that I’m learning every day. And really to just be who I am.  Sometimes I’m a lupus patient and sometimes I’m a jets fan, sometimes I’m a wife and sometimes I’m a cat mom. Sometimes lupus is first on the list and sometimes it’s last one the list.”

-          Amanda from lalupuslady.com and @LALupusLady

“On the subject of the end of life and death. There’s a stigma surrounding death but it’s something that we need to discuss and that’s present in conversation.  Especially for those with chronic illness. It’s something that must be discussed before we get to that point in our life and our health. We would be less afraid if we were more informed about end of life care.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

“There’s no cure for lupus. Each patient is unique and you’re going to present differently. So our discussion is unique and different because every lupus patient is like a fingerprint. We’re all going to have our own lupus. But our community unites us together.”

-          Amanda from lalupuslady.com and @LALupusLady

“I often feel isolated because most Lupus Health Activists are located in the United States and I am in Australia and it feels like they all know each other.  The advocacy presence just isn’t as strong.  Benlysta has not yet been approved here but I am starting a petition to do so.”

-       Iris from http://www.sometimesitislupus.com/ and @IrisCarden

“Sometimes living with lupus feels like being in the Olympics and the games never end, but at least we’re in it.”

-          Amanda from lalupuslady.com and @LALupusLady

“I think they would be surprised at how much fun we have while living with lupus. It can be such a serious disease and since it’s chronic and there’s no cure, we have to live with it and learn how to have fun while living with it. In the lupus community there is a ton of glitter tossing, butterfly wing flapping, feet stomping… there’s tons of fun going on. We like to look at the positive side and understand that there is a silver lining in every storm cloud.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

“Even if you’re in your pajamas your pajamas can be cute and you can have really cool socks. And if you’re out and able to get out and you can wear purple wig with butterfly wings or you can be like me and wear pule boots and a cape. With our wings and our cape, it’s not an easy flight, but we’re on this journey together and we’re making it fun.”

-          Amanda from lalupuslady.com and @LALupusLady

“I think it’s really important for health activists to join across conditions.  What benefits one health community benefits another. I feel like if we all move together in the same page we can move towards better healthcare.  We need to merge our community across conditions so we’re coming together for the same thing.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

Thanks to all the Health Activists that participated, we hope this Roundtable will help you to raise lupus awareness and can’t wait to take part in more lupus awareness events throughout the month!

To download our Lupus White Paper with the complete findings from our Roundtable visit: http://info.wegohealth.com/lupus_onepager/.

What better way to correct myths and chip away at stigma than by sharing the truth and what’s real? So let’s have True Life Tuesday.

Inspired by the popular MTV Shows True Life and Diary – let’s share (or attempt to share) what it’s really like to live with and talk about the health conditions we (or our loved ones) live with. Start your blog post with the phrase “You think you know, but you have no idea…” Or make a list of things about your life or condition you think people should know. If someone were to document your life, condition, or health focus through the lens of reality tv or maybe a documentary – what would they see? What would surprise them? What used to but doesn’t surprise you?

Share your true life story with us and link to it on our Facebook page or event. Can’t wait to see what you unveil with your documentary-style, non-fiction, reality TV, or just blog-style portrayal! You can also join the party by sending a tweet or Facebook status (everyone on every social network is invited to join!)