Friday, April 23, 2010

Are You a Health Activist?

Last week, I had the chance to attend WEGO Health’s first Health Activist Meet-Up here in Boston. It was my true public excursion in weeks due to infections and related pregnancy issues, and I am so glad I was able to go.

The WEGO folks are infectiously enthusiastic about health care and social media, and from the “pick three hashtags to describe yourself” to the lively chitchat before and after the breakout sessions, the vibe was friendly and dynamic. I had the chance to catch up with friends like Cheryl Alkon of Managing the Sweetness Within and meet several new bloggers and Health Activists, like Karen of Bitter-Sweet.

I was pleased to have the opportunity to lead one of the three sessions, one called “The Road to Activism: How to Turn Your Passion into Activism.” As I prepared for the event, I thought about what it was I was passionate about and what it takes for anyone to turn passion for an idea or a cause into activism.

I used the following steps as initial talking points:

1. Identifying Your Passion
2. Recognizing Your Strengths/Becoming an Expert
3. Finding Your Voice
4. Locating Your Niche/Building Your Community

Luckily, I had a dream group of articulate, interesting people and from those brief talking points, a true conversation emerged. Of the many take-away points we covered, one that stands out to me is the idea that everyone becomes a blogger, author, advocate, etc (in sum, a Health Activist) for different reasons and wants different things from the community in which they join. For example, the newly diagnosed might want validation or commiseration, while “veterans” might be more interested in sharing experiences or offering wisdom from experiences. Successfully turning passion into activism depends partly on knowing what you offer, what you want out of the experience, and connecting with like-minded people.

In my case, I’ve always been passionate about writing and after an entire lifetime of illness and hospitals, I realized maybe I could use that passion to share experiences and lessons learned. My passion is chronic illness in younger adults, because so many of us live with it and face challenges unique to this stage in life. As I joked the night of the event, I am equal-opportunity when it comes to chronic illness—I don’t focus on any one condition or disease, partly because I have several conditions, because I am a rare disease patient, and mainly because I believe the universal challenges of life with illness unite us.

But that’s not what works for everyone, and that’s why I think the whole idea of turning passion into activism is so interesting—there are so many outlets and ways to express ideas and build communities. I think the robust diabetes online community is a great example of how successful a community of people contributing perspectives on life with a particular condition can be.

What’s your reason?

Other compelling questions we discussed that evening were deceptive in their simplicity:

What do we mean by activism? When do you become an activist?

Some of us were of the opinion that it can happen when you don’t even realize that’s what is actually happening. It could be the first time you write a blog post, the first time you get a reader comment that really stays with you, the first time you put yourself out there.

But I’m interested in what you have to say-what do you think when you hear the word “activist?” When does that transformation from merely being passionate to becoming an activist occur?

Thanks again to WEGO Health for a great evening that set the stage for relevant and inspiring conversations. Looking forward to the next meet-up!


Lyrehca said...

Fantastic write up of the event--good seeing you that night!

And as an aside, you were a terrific discussion group leader. Everyone: Laurie is a rock star!

Anonymous said...

One of the reasons that I blog is that I am deeply concerned about the impact of toxic chemicals on everyone but especially on our children today. There seems to be an epidemic of childhood illness and serious diseases like cancer taking place. I wouldn't necessarily call myself an 'activist' but I am lending my voice to alert others.

At the same time, whatever our illness may be, we can find that place of wellness that always resides within each and everyone of us regardless of outer conditions and circumstances. So my other aspiration is to be a voice that helps others connect with their fundamental goodness. That's one reason I enjoy your blog - you come from a very deep and thoughtful place.

It's interesting that I don't see myself as an activist, but I do try to spread the word in my own way.

The Sarcastic Soprano said...

Thank you for inspiring me! I loved your book! Before I read your book I didn't know anyone else who was young and chronically ill. Your book empowered me to find my voice, encouraged me to be a "difficult patient" and made me feel like I wasn't alone.

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