In praise of online communities

How many online communities do you participate in? I have trouble counting mine, separating the technology or service (Facebook, Twitter, LinkedIn, email servers) from the communities that come together via those services. But no matter how I look at it, I count mine about a dozen. Some are personal, some are professional, and some (mainly Twitter and Facebook) are a mix. They vary in their importance and durability in my life. Some have been with me for ages (the longest lasting being more than 15 years); others are very recent. Some have come and gone.

If you asked me which community is the most important to me right now, I’d be hard pressed to answer. But if you asked me which one was the most important throughout my years of participation, my answer is clear.

The Circle (new window) is an online support group for people who love someone with prostate cancer, and for the men themselves. I found The Circle after my husband’s hormone therapy had stopped working, and I was searching the Web for resources and information. For almost four years the other Circlers and I shared information, support, and hope; and for the last six months of Antonio’s life I emailed them almost every day, sometimes several times a day. Even during the two weeks when I lived in his hospital room, I always took time during my occasional brief visits home to update them on how he was doing and how I was handling it. They were my online family, and they understood.

I shared our journey because doing so was keeping me sane… Yet it turns out that my sharing was a two-way street. After Antonio died, I received many emails letting me know how much meaning these people had found in reading our story — even people with whom I had hardly corresponded at all.

The mail from women struck a special chord. “Sometimes I dread reading your posts,” wrote one, “because I know that one day I will be traveling the same path, and it scares me tremendously. But seeing you walk that path gives me hope, because now I know that it can be done.”

And here I was, thinking they were keeping me sane. But their messages told me that I was giving to them equally… and that deepened our connection and facilitated my healing.

Antonio died in the spring of 2001, more than eight years ago (I write this post on our wedding anniversary), and I stayed with the Circle about a year afterward. Prostate cancer is no longer a part of my everyday life, and I don’t need that support any more. But that doesn’t change its importance for me, nor does it lessen the fondness with which I remember the friends I made there.

Would I have managed without this support group? Maybe. Probably. Would I have managed as well? Absolutely not. Without a doubt, the Circle has been the most meaningful online community in my life so far.

Part of this post was taken from a talk I gave in 2006 to my congregation. You can read the whole thing (new window) on my congregation’s web site (scroll down to see my talk; I was last).

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  1. Posted 15 May 2009 at 5:48 pm | Permalink

    Elizabeth — this is very well-stated. I retweeted it. Online communities can be very important. I wonder if health care professionals are starting to refer patients to sites like “the circle”? I’m very interested in the trend toward e-health, as described in the blog, I have a neighbor who is a physician who is very involved in the web 2.0 movement for health care. I worked on it 1997-2000 through a grant from the Robert Wood Johnson Foundation on end-of-life care. Though that project is no longer funded, I’m sure the overall movement in “e-health” has advanced a great deal since then.

  2. Posted 15 May 2009 at 6:31 pm | Permalink

    years ago, I was in a similar group. It was the best place for advice, help, support, grief and connections.

  3. Posted 15 May 2009 at 7:48 pm | Permalink

    Nice piece, Elizabeth. Thanks for writing it. It’s a sad day. Take care.

  4. Posted 16 May 2009 at 1:58 am | Permalink

    Very nice, Elizabeth. Thanks for reminding people that these technologies *can help connect* people (ie, they aren’t inherently “isolating”)

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