Continuing our discussion of IRL Health Activism, this week’s #HAchat focused on the intersection between the online and offline Health Activist community. Logistically, offline advocacy was around long before online advocacy. After all, the internet is still relatively young, and online patient communities as we know them today are still developing. While some Health Activists were able to take advantage of the anonymity of the online community from the get-go, others had no choice but to seek IRL support.
We have discussed time and time again the benefits of the online community: immediate access 24/7, anonymity, endless contacts and resources…but we always discuss this subject as if online and offline activism (or life) are mutually exclusive concepts. Believe it or not, that person whose blog you’re reading has a whole life on the other side of their computer. How these worlds overlap and how Health Activists balance the commitments that have to online and offline relationships is a different story.
What do the people in your real life think about your Health Activism?
For the purpose of this discussion, let’s assume that your friends and family know about your blog, your community, the online forum where you participate. Let’s also assume they have little to no idea what you do as a Health Activist, and that your online and offline lives are relatively separate. Many Health Activists in Tuesday’s chat commented that their friends and family didn’t really read their blog, or that they would keep their Health Activism separate from their personal social media accounts so that their followers don’t get bored. This is understandable, while friends and family certainly want to know about your health and how you’re doing, they probably aren’t going to be super interested in recommendations for safe trick or treating when your kid has food allergies if that isn’t something that affects them.
How does it make you feel to keep such a big part of your life so separate? Keeping your personal and Health Activist accounts separately can definitely be useful in terms of organizing your online social media presence, but it’s ok to speak up and tell your other followers, friends and family about what you’re trying to do with your blog or your Facebook page. Health Activism doesn’t get enough recognition as it is, so bringing a little bit of your online crusade IRL can spread awareness of the power that Health Activists have to incite change!
Having it all
Obviously your Health Activism isn’t the only thing you have going on in your life. You have family and friends vying for your time, doctor’s appointments, jobs, volunteer activities. You need to clean and eat and rest and exercise. How do you do all of these things AND spend hours a day blogging, emailing, looking for content and research? CIRants was interfering with my real life, then real life interfered with online life; still looking for the balance. #HAchat Like anything, it takes practice and knowing yourself well enough to know what you need in your life to stay happy and healthy. Health Activists had some tips for maintaining balance:
serenebutterfly I tend to have a specific time in the day to write my blog, or tweet or spend time on Facebook and then make time for chores
Your online world and your offline world are not mutually exclusive. Your real life interactions help to shape your presence online and vice versa. And your online presence and the experiences that you have online will shape that way you address your condition IRL. Overlap between them can take many forms, most basically in the sense that your online relationships have the ability to turn into IRL ones. HealthcareNovel It’s been fascinating for me to see how online activities can lead to those ‘real’ interactions in daily life. #hachat
It’s about balance
Having it all is all about balance. Everyone has to find what works for them. Here are some tips from Health Activists about finding the right way to have fulfilling interactions both and on and offline:
FoodAllergyBuzz I would say, start small. Get a sense of how long you spend online and how much time you have to devote to being online.
serenebutterfly: Always schedule time for ‘you’. Relax and have a nice soak in the bath, or spend time with friends over coffee, watch a film
Remembers that it’s ok to get frustrated. Remember that other Health Activists are there to offer support and advice about how to find your balance:
AfternoonNapper It seems that just when I’m getting REALLY frustrated & overwhelmed, I hear “you don’t know how much this has helped me. That said—don’t forget to encourage other advocates. We all need to support one another’s support efforts.#hachat
Remember that there is value in each relationship that you have, whether it be on or offline:
It’s easy to get caught up in what you’re doing, especially when you’re starting to get to know new people or you have recently discovered a group that you really identify with. As such, when you’re delving into the online community, don’t forget the value of the relationships that you have IRL. HealthcareNovel Recognize that online will always be 24/7 so just find your space and do your best – people will be there when youre ready #hachat Just because you can talk to an online friend any time doesn’t mean you shouldn’t save time to make a meal with your friend from work. Just because your online friends “get it” doesn’t mean that that IRL friends can’t offer words of support and advice, or even offer an escape from thinking about your condition. Just because it’s easier to open up to your online friends doesn’t mean that you shouldn’t try to educate your IRL friends and family. After all, how can we spread awareness if we don’t reach out to those outside of our communities?
Be sure to join us next week as #HAchat participant, author, and bridger-of-gaps-between-physicians-and-patients Robert Green (@HealthcareNovel) hosts. We’ll be tweeting at 3pm ET on Tuesday, July 31st and hope to see you there!
For Health Activists it doesn’t get more IRL than awareness events. We know that many members of the WEGO Health community must have attended at least one awareness event in their life, whether it be a talk at a local organization or book store, a walk, a conference, or a fundraiser. But what goes into these events? How big or small do they have to be to really “raise awareness”? Check out what Health Activists had to say about hosting awareness events during this week’s Health Activist Tweetchat.
IRL Awarness ≠ Walk
When you’re first thinking about how you want to raise awareness, don’t get sucked into the “awareness events = awareness walks” mentality. It’s possible to raise awareness in many different venues, formats, and with many different people involved.
No matter the venue or format, awareness events should spread knowledge and understanding around a certain condition or cause, and should include patients, caregivers and healthcare professionals so that all voices are heard.
Consider the goal of your event carefully!
Before you start rolling out the banners and ribbons, carefully consider the goal of your awareness event. The format of your event will depend largely on the goals that you hope to achieve. Are you hoping to raise funds? Get better healthcare services for people living with your condition? Inform the general public about your condition? Who do you want to attend the event? What do you want the outcome of the conversations to be? The answers to these questions will define what your event will look like. For walks, auctions, benefits, etc., the goal seems to be to raise money to fund a cause or research. Other types of events seem to focus more on getting people together to discuss their experiences and activities and provide support.
kimmieCollas : the goal depends on the event. For some, it’s raising money for research, for others it’s raising awareness;
Define what will make your event successful!
Once you know what you’re hoping to achieve at your awareness event, define what will make the event successful. If you’re raising money, how much money do you hope to raise? If you’re hosting an educational event, how many people do you hope will attend? If you want to connect patients with Healthcare Providers (HCPs), what should the ratio of HCPs to patients be? Setting clear goals will help you to plan your efforts and activities to ensure that your event is successful. No matter what your goals are, be sure to define them before you make any big decisions about what your event will look like. They will guide you through the planning process to ensure you, your organization, and your attendees get the most out of the event.
Be prepared for potential challenges!
After you define your goals, be sure to define anticipated challenges so that you can address them from the get go. For instance, perhaps you have a great community of patients, but don’t have great relationships with healthcare providers. In this case, you should start reaching out to potential attendees well in advance. If your budget is tight, be sure to factor in unanticipated costs. If the event is soon, be sure to set realistic planning milestones to keep you on track. And of course, be sure that you have enough help! Get people to commit to helping out at the event (with clearly assigned roles and responsibilities) well in advance, and make sure you have extra hands the day before and the day of the event. There are always last minute tasks to be done, and you don’t want to be panicking right before your attendees start to arrive. Before participants do start to arrive, you will also want to have clear guidelines as to what to do during a crisis: MHoskins2179 Just because you’re trying to raise awareness, which is good, that doesn’t mean all will agree w/approach. Just the way it is. #HAchat. Someone is bound to disagree with something going on at your event, and knowing how you’re going to deal with issues from participants or attendees before they come to you with a problem will save everyone a headache.
As much as you try to plan for success, you should also keep several things in mind when it comes to ensuring that your event doesn’t fall into the “unsuccessful” category. Be sure that you stay true to your goals during the event. Yes, awareness events can serve as a great source of exposure for numerous organizations and those sponsoring the event, but don’t let an outside agenda run the show. MHoskins2179: Too much self-promotion, so you lose sight of message/issue of the awareness-raising. That= unsuccessful.
Next, have clear next steps or action items. The last thing you want is for folks to walk out of your event with lots of pamphlets that they are never going to read. You want them to walk out of your event refreshed and excited about what they just learned and about future opportunities to engage. What are these opportunities and next steps, you ask? You have to define them!
While these are certainly not the only steps that go into planning an awareness event, taking the time to think about these items will definitely help to ensure success!
Have you hosted an awareness event or do you have one coming up? Let us know about it! We’d be happy to let others in the WEGO Health community know about your event. Additionally, you can email us with any other tips, tricks or suggestions at firstname.lastname@example.org. Tune in next Tuesday at 3 PM for more discussion of Health Activism IRL!
To keep going with our July Health Activism IRL theme – let’s delve into the ever-important aspect of in-person awareness events. These are the walks, talks, fundraisers, and other gatherings that help rally together a team of people for the same cause. Have you attended an event for your health condition or focus? How did it go? If you could create a perfect awareness event – what would it consist of?
Join this week’s Health Activist Tweetchat to discuss:
– What defines an “awareness event?” What types of awareness events exist?
– Which events are the most successful and why? Which are the least successful?
– What should the goals of all awareness events be?
– What are the challenges of hosting/attending awareness events? How can one overcome such challenges?
– How can we help awareness events become more creative and influential as Health Activists?
– What can online community bring to awareness events? (And vice versa)?
It’s going to be an interesting discussion! Whether you’ve started your own event, participated in someone else’s, given donations, or simply heard about other events – there is a lot of ground to cover. In true health leader fashion we’ll be looking critically at what it means to raise awareness and why in-person events are important – if they are. Wear your analytical hat and bring your knowledge of what other health communities (or even non-health-related non-profits, orgs, charities, and more) are doing to get their name out there and their cause supported.
Join us Tuesday, July 10th, at 3pm EDT. We’ll be tweeting using the #HAchat and you can join us here: tweetchat.com/room/HAchat#
Here’s a post written by Community Coordination Intern Michelle on a healthy living topic that is especially apt due to the lovely weather and summertime activities many people are engaging in. Enjoy! –Amanda
The Motivation to Move: Be Your Own Athlete
by Michelle Totino
Well everyone, here it goes… my first blog post! I’m a little nervous. But first, I should introduce myself. My name is Michelle, and I’m a new intern at WEGO Health. I’m not only thrilled to be working with such an empowering company, but the chance to hopefully interact with the passionate people who lead their health communities – that’s you, Health Activists! – excites and inspires me so much. What I hope to bring to the table is the opportunity to engage and to motivate you in staying physically active despite your compromising health conditions. This “staying active” bit could be through sports, which I love, or anything else that gets you up and moving.
I have played sports my whole life, from soccer and basketball to softball and ice hockey. I still play field hockey competitively with the Boston College club field hockey team, and I’m really into cycling, too. I’m about to start my senior year at BC in the fall, so that means I’m sadly realizing that organized team sports must end at some point. With that said, cycling is an activity that I can hopefully do for decades to come (Is anyone excited for the Tour de France?)… Plus I think that riding a bike is more fun than running!
Alright, enough about me. What gets you moving?
Everyone knows that the keys to a healthy lifestyle are eating right and staying active… blah, blah, blah. My message to you is a mere reminder that fitness is essential for your physical, mental, and emotional health regardless of your age or health condition. But what if you suffer from a condition that limits your physical ability or makes it extremely painful to exercise?
You simply don’t have to be a triathlete, Ironman champ, or Olympian to strengthen your body, mind, and spirit. All that matters is exercising regularly at some level. The motivation to move your ailing body is sometimes the biggest hurdle, though, which is even the case for people who don’t have a serious health condition or chronic illness! Take it from some encouraging Health Activists in this video who suffer from joint pain.
Another example is Peter Waite whose fibromyalgia poses a challenge to his exercise regimen. He shares his fitness experiences and provides hope for other chronically ill patients on his blog:
“There’s nothing like exercise to tell your body who is in charge,” Peter says. “Sure there are still days when I’m flaring and don’t feel well enough to exercise. On those days I don’t give myself a hard time about it. You have to accept that there will be valleys between the mountain highs.”
In a recent article, Steven B. Abramson, MD and other medical experts at NYU Langone Medical Center offer tips for managing arthritis. In terms of physical activity, they advise patients:
- To stay informed with arthritis management strategies
- To stay active because physical activity “decreases pain, improves function, and delays disability”
- That moderate exercise (with breaks) about 5 days a week can be beneficial
- That weight matters because less weight means less joint pain and increased function
- To protect your joints because correctly strengthening your muscles and tendons decrease potential injury
Also, feel free to check out DavidHBlattMD’s YouTube channel. Despite his Parkinson’s disease, David will show you how to get a great workout in the gym and on the slopes.
Those diagnosed with joint pain are not the only ones who find it difficult to move around. What do you do to motivate yourself and/or others in your community to get up, get out, and get on living?
In July, WEGO Health is getting real. We know the online Health Activist community is an invaluable source of support and encouragement – it’s what we’ve dedicated our mission to and the best way for empowered patients to make a real difference in the lives of other patients on a grander scale. But – regardless of the infinite benefits of online community… there’s still nothing that can quite replace the power of face-to-face, offline, human connection. There’s nothing like confiding in someone, meeting a kindred spirit, or finally putting a face to a name. So, this July, WEGO Health is looking to foster that connection offline. We’ll be focusing on Health Activism IRL (in real life) and bringing online efforts offline (and vice versa). But worry not – it’s still June and we’re still focusing on Health Technology! We just wanted to kick-off a July project as early as possible so we can get as many of you involved as we can.
Background: Inspired by Frank Warren’s amazing project, Postsecret (if you aren’t familiar with it – go visit it immediately!) We are asking you to share your secrets with us! In the spirit of Health Activism IRL – we’re asking patents, Health Activists, and even healthcare professions to mail in their health secrets. That means creating an actual postcard, letter, or physical note – and sending it via snail mail to the WEGO Health offices in Boston.
Logistics: Tell us something about yourself, your condition, or your health community that could be considered secret or not well-known enough. Maybe it’s a secret from back when you were first diagnosed – or something you’d confronted in your community recently. Maybe it’s something you wish you could tell the people in your life about what it’s really like to live with your condition. Maybe you want to confess something, share a thought for newly diagnosed patients, or just reiterate something that’s important to you. Tell us something that you want us and the wider online health community to know.
Who: You. And your community members. Anyone you know, really. They don’t have to be an online health leader – they can be someone you know, a caregiver, a fellow patient, or even someone in the healthcare industry. Everyone is invited to participate.
What: Health secrets, confessions, thoughts, reflections, or facts. As long as you can relate the thought to “health” (think big here – almost anything goes) – it counts!
When: Starting now until July 23rd.
Where: From your hometown to ours. We’ll be posting all of the postcards we receive on our various social media platforms, and displaying them in real life on a bulletin board here in the office. Send all postcards, letters, notes, and creations to:
WEGO Health 180 Lincoln St. 5th Floor Boston, MA 02111
Why: To raise awareness, get our communities involved, share what’s true, encourage honesty, and have fun! Additionally – after we receive all the postcards – we’ll be creating an exclusive HealthSecret e-Book for everyone that you can SIGN UP FOR HERE. We’re hoping to get to 100 health secrets, confessions, affirmations, or shout-outs from you and other members of the online health community.
How: Be creative! You can use a postcard that’s pre-made or you can make your own (look at PostSecret for awesome examples). You can also write a letter and mail it in an envelope. Remember: you can send the postcard/letter anonymously or you can sign it if you’d like. Do whatever makes you feel the most comfortable.
Invite others: Make sure your health community is well-represented in our e-Book – share the HealthSecret project with your friends, members, and followers. Here’s a picture you can use to share the HealthSecret project and quick blurb you can paste into a blog post, a Facebook note, email, and a tweet to tell others about it…
Blurb: Psst! Secret’s out. WEGO Health is compiling a collection of health secrets into an e-book to raise awareness and build cross-condition camaraderie. Get involved: http://bit.ly/LAcAPz
Tweet: Psst! Secret’s out. @wegohealth is compiling a collection of health secrets. Get involved: http://bit.ly/LAcAPz #HealthSecret
Any questions, concerns, comments? Email us at email@example.com. We cannot wait to see your secrets and start compiling this e-Book. We think the final product is going to be an incredible resource for new patients and just really awesome to read.