One of the best and most fun decisions I ever made was to join a support group for people with lupus.
At the time, I had just moved back to the state where I grew up after graduating from school. I knew people in the area, but didn’t yet have a lot of friends my age or anyone I felt comfortable telling about my disease.
I’d always thought of support groups as a bunch of really emotional people sitting around crying about their problems. Did they really all hold hands and sing kum-bai-yah like in the movies? I needed to talk to someone who could relate to what I was going through, but I wasn’t sure a support group was for me.
I don’t even know the words to kum-bai-yah.
A quick Google search led me to the Lupus Foundation of America’s Houston chapter. The support group coordinator, Linda, sounded fairly down-to-earth over the phone.
“We meet once every two months. It’s hard to get people together more than that,” she’d told me.
We chatted a bit before I got off the phone about our symptoms and serious flares we’ve had. Linda had survived a neurological flare like me and had had some issues with her kidneys. Her straight-forward manner and unemotional recounting of the facts of her illness put me at ease. She spoke about her disease in the same way I spoke about mine.
“We’re not complainers here,” she would laugh over a glass of wine when I met her in person.
The first meeting I attended was the annual Christmas party. I dragged my husband along with me to a trendy Italian restaurant with exposed brick walls and candles flickering on each table. I greeted the four ladies sitting around a bread basket. I was the youngest by about fifteen years. An angry red surgical scar snaked up the arm of the woman across from me, but everyone else looked normal- just like me.
We chatted and laughed. We exchanged the ten dollar gifts we had brought and someone accidentally lit some red and green tissue paper on fire.
As it turns out, a support group with pyrotechnics was exactly what I was looking for.
I returned to support group nearly every meeting after that. To my relief, nobody ever cried. No one wallowed in self pity.
Nobody even holds hands, because we all have arthritis and are afraid of germs.
I’m not sure why I was so surprised that all the other women with lupus were… well… just like me.
At each meeting, Linda passes out an itinerary listing Lupus Foundation events and symptoms to watch out for. We focused on kidney disease one meeting, then neurological issues the next. She arranged for a holistic health practitioner to come in and talk to us about inflammatory foods. Two meetings later, a rheumatologist came to teach us about autoimmune diseases and answered our questions.
Nobody whines, but we do spend time talking about our symptoms and their impact on our lives. When I had issues with insomnia, joint pain, or explaining my disease to family members, the other ladies had answers. I learned the name of the best over the counter sleep aid. They gave me advice on which vitamins to take.
Over time, I slowly stumbled onto the true definition of a support group: A group of smart ladies who have been down the road you’re traveling and can tell you where the potholes are.
A woman who was just diagnosed recently joined our support group a few months ago. Although she’s older than me and has kids, she reminds me of myself when I was first got sick. She’s tough and tries to push past the fatigue and pain to continue working. She doesn’t want to complain, but she needs someone to talk to. She’s not a whiner. She lives near me and has trouble seeing at night, so I pick her up and we stop at Starbucks on the way on the way to meetings. Chatting with her about symptoms and life in general makes the long drive fly by. When we don’t finish our conversation by the time we get home, we go out to dinner later that week.
Being newly diagnosed can be isolating and scary, and she has lots of questions. It feels really good to sometimes be able to answer them.