Sunday, May 22, 2011

IRL - Do You Meet and Greet?

IRL means In Real Life.  I'm writing a duo of blog posts on this topic because I think it really applies to Health Activists.  This post deals with meeting our community members in person...

Yes, we are Health Activists because we interact with other patients online.  But some of us take our Health Activism to a different level... we meet some of our community members in the flesh.

Have you ever met one of your community members in person?  How did you set it up?  What was your experience like?  Would you do it again?  What kind of advice would you offer others who want to meet their members IRL?

Meeting someone you have only had interaction with online can be a spooky thing, especially the first time.

The first person I met IRL was my friend Michelle.  She is a Graves' Disease Health Activist and one of the first online patient advocates I ever interacted with online or otherwise.  She and I have remained close over several years now, and I treasure her friendship as something beyond our activism... this is very personal.

Michelle lives in Georgia.  My hubs and I were traveling to Florida for a conference, and we made sure that one of our layovers - a long one - happened in the Atlanta airport.  Michelle and her son got a ride and we met for lunch in the airport at a sandwich shop.  We only had 2 hours, but we packed a lot of interaction into that time, and that only cemented our friendship further.  To this day, we remain close and write each other frequently both about our Graves' Disease and about our lives in general.

A couple weeks ago, I had another opportunity to meet online friends IRL.  I was able to connect IRL with some of the superstars of the Migraine world when I was asked to participate in a conference in Philadelphia, PA.  Because of my experience with Michelle, I had the courage to tell them "Yes!" and I'm so glad I did.  We spent two days together, and friendships that we have had online for some time stepped up to an entirely new level as a result of that personal interaction.  I'll share a photo of our little group below.  It's a picture I never imagined would happen.  Look at us all, online friends who all came together because of our activities with patients and our passion and dedication to helping others with a debilitating disease.  I don't mind telling you, I'm pretty proud of that photo and what it means.  Pictured below from left to right are:

Teri Robert (Health Central, and HelpForHeadaches), Anne Ledet (Migraine Puppet), Megan Oltman (FreeMyBrain), me (WEGO Health,, Janet Geddis (The Migraine Girl,, and Diana Lee (Somebody Heal Me,

(...and yes, the ever-present D&G sunglasses came off for the photo, but you can see them still in my hand!)

Next I'll be posting about taking online Health Activism to a whole new level - becoming politically active for your cause...


Comment by JennyPettit on May 23, 2011 at 8:35pm
I could write a looong reply...but for now I'll say yes, I do a good bit of IRL activism, and have met a few other activists in the process (most notably Julia of Reasonably-Well).  As you may know, I'm doing a webinar on IRL activism on Thursday, which is why I'm not hogging your wall here;)  But I had to leave my resounding YES, I do dig the IRL scene:)
Comment by Kelly Young on May 23, 2011 at 10:07pm
I agree with Jenny. And Ellen.  :D
Good luck Thursday Jenny!
I live near Disney & I get to meet people who are coming thru Orlando if they give me a heads up. I am thrilled to do it both for interviews or to hug RA sisters - what we call "rheum mates."

We also travel to do this some and it seems like a natural outgrowth of our work online.
Comment by Kelly Young on May 23, 2011 at 10:09pm
I love your post Ellen & I hope I get to meet you in person sometime this year!
I'll post our recent meetup photo if I can here. Looks like it might work. Yay WEGO!

Comment by Ellen S on May 24, 2011 at 10:58am
Oh Jenny, I'm so sorry I did't get a chance to meet in person when I was in Philly, but I still hope to meet you IRL another time.  And Kelly, we DO often get to the Orlando area, so let's connect the next time that happens!!!
Comment by Ellen S on May 24, 2011 at 11:00am
Jenny, why don't you post the link to the webinar here, just in case it gets missed elsewhere.  Can't wait to see how it goes - GOOD LUCK!!!!
Comment by JennyPettit on May 25, 2011 at 9:46pm
Ellen - here's the link to register for the webinar tomorrow (5/26), still plenty of time.  Thanks!

Kelly - love "rheum mates"; been trying to find a reason to bring that up in conversation for 2 days;)
Comment by naomicreek on July 6, 2011 at 8:32pm
I run an IRL support group for young women with arthritis (most have RA) and we also meet online, on our forum and facebook page. Most of the IRL members I know online too, but most of the online members I have never met in person, and would love to one day. They are all amazing women and all do their bit for raising awareness of the many auto-immune and joint diseases they have. I always feel so inspired and humbled after our meetings:)

I also do community speaking with different groups as a representative from Arthritis Victoria - it might be schools, elderly folk groups, rotary clubs etc about how the services that are available (which most don't know about), and how they can live a better life and manage their condition. It's lots of fun and I feel really great when I get to meet lots of wonderful people :)

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