Friday, February 27, 2015
Ten years ago, shortly after my diagnosis, I asked my doctor about support groups in the area. She referred me to a chronic illness group which included people with a variety of diagnosis. I attended just one of those meetings, but it just didn't feel like a good fit for my needs at the time. So I looked for online sources specific to Sjogren's syndrome and have definitely found them. Big time. But I've received several email in the past asking about Sjogren's support groups, and have had no personal experiences with them but was only able to point the authors of the emails to the Sjogren's Syndrome Foundation website, and decided it was high time for me to find a local group and see what they had to offer.
It was a fairly small group, about ten of us. The format of the meeting was simple: everyone took their turn in sharing events in their lives over the previous month. We sipped coffee and tea, laughed, listened, and talked. When it was my turn, I have to confess that I talked probably longer than I should have. I'm grateful to the members as they listened patiently. As I talked, I realized what a different thing it was to have face to face interaction with other patients.
I have this wonderful virtual soapbox here on Reasonably Well to write in detail every little thing in my life that I choose to share, and I do it every single day; so one would think that I would have been content to just simply listen. Which, of course didn't happen partly because I'm a blabbermouth. But sharing my experience with Sjogren's syndrome here on my blog is very different in that it's told from my own personal perspective while sitting alone with my laptop on my knees. When I sat down at the table in a church fellowship hall with a group of people who also have Sjogren's, I felt as though I was rediscovering my disease anew. I could see it in these women's faces, in their eyes, and hear it in their voices. I wanted to tell everyone about my story and I wanted to hear theirs, too.
The session lasted an hour and a half but seemed to take about fifteen minutes as time flew by. Before I knew it, we were cleaning up the coffee cups and pushing tables back into place. The group meets monthly, and I hope to attend the next meeting if my energy limits will allow.
If you live in the Portland area and would like more information about this support group, drop me an email. I'd be happy to share the location and time of the meetings. You can also visit the Sjogren's Syndrome Foundation webpage to find information regarding this and other support groups in the United States, Canada, and internationally.
Posted by Julia Oleinik at 12:30 AM