Changing my Tune: Learning the Benefits of a Support Group

When I was first diagnosed, I had no interest in attending a Lupus support group meeting. There was no way I was going to go sit around a table, filled with desperate, depressed, sickly people who were probably far worse off in their disease than I was. I’d read enough about the potential and far-reaching effects of Lupus; I didn’t need to see them in person. I was also fighting to stay positive and saw no benefit listening to a bunch of strangers try to convince me to feel sorry for myself or for them.

More than that, I knew if I went, I would be admitting that I was too weak to deal with Lupus on my own. I would no longer appear resilient or self-sufficient, not to others, or to myself. That sense of independence was vital to me, and I wasn’t going to do anything to endanger that freedom.

After about six months, though, to appease my family, I agreed to attend a meeting. I asked my husband and sister to accompany me, so that they could see, first hand, how out of place I was in such a group. As nervous as I was before arriving at the meeting site, the moment I walked into the room, I felt a great sense of relief. Not because I had finally arrived, but because from the looks of those gathered together, I figured we’d walked into the wrong room. The women sitting around the table appeared pleasant, lively, and put-together. There wasn’t a sick face in the group, and I remember thinking there was no way this was a congregation of people inflicted with Lupus. I was proven wrong, as a kind, well-dressed woman came forward and introduced herself as Gail, the group's coordinator. She invited us to sit down, and then asked that everyone go around the table and introduce themselves.

Each person told their story of how they were diagnosed with Lupus, and I remarked at the absence of even one sob story. These women weren’t lamenting the fact they had Lupus, they were dealing with it with panache and confidence, just the way I envisioned myself doing. The stories they told sounded like my story: a diagnosis out of the blue, total shock to their lifestyle, a struggle to make the symptoms work with their life’s plan. Listening to them talk about the very same symptoms and medical terms with which I’d grown so familiar gave me an overwhelming sense of comfort and security. In fact, everything they said made me feel understood, validated, and connected. Here was a group of ordinary, well-adjusted, accomplished people, trying to deal with the inconvenience of Lupus, just like I was. It was as if I had walked into the world’s greatest Lupus community, where everyone spoke the same language and no one had to explain themselves. Instantly, I knew I’d found a place in which I belonged.

I've now been attending a monthly support group meeting for almost 7 years. During each meeting, I'm reminded that we're normal, accomplished people first, and Lupus patients second. We talk about the trivial parts of our everyday life with the same fervor as the serious, significant aspects of Lupus. Traveling the world, competing in marathons, and finding the best new restaurants in town are just as important as discussing the latest drugs or procedures in the chronic-illness market. The topics discussed run far deeper than talk of our disease, making me feel part of a well-rounded, varied, active community of people. Oh, and by the way, we all just happen to have a chronic, debilitating disease.

Want to seek out a support group in your area? Check out the LFA website/state chapter page for more information. Click on your state's website, and then look under "Services" or "Support" for a list of groups in your area. Here's a direct link to support groups in my specific area. You'll see mine listed there - the one that meets in Alexandria, VA. Feel free to contact Gail if you're interested in attending. We'd love to have you!

If an online support group is more your style, check out Daily Strength. I've never participated in one, but an online group may be just the connection you're looking for.