Deeply defined by my own turbulent roller coaster-like relationship with lupus since 1991, I’d always considered myself a volunteer with the Lupus Alliance of Long Island/Queens. However, through the years, frequent flares, strange secondary complications, seemingly never-ending surgical scars and visible alterations of my once familiar body offered perfect justification to dwell behind-the-scenes in comfortable obscurity. Nevertheless, when I received an email announcing the training of facilitators for the new “Emerge from the Cocoon of Lupus” support group meetings, I signed up. I was done hiding; it was time to more purposefully commit my own experiences to bring positivity to someone else’s life.
Scared stiff at the first meeting I was supposed to facilitate, I chose the coward’s way out and allowed my more experienced co-facilitator to skillfully relax everyone into discussing the night’s topic. In my second meeting co-facilitating, shaking and jittery, I had no choice but to bravely put on a smile and forge ahead, conscious of how I would be perceived and what these good people might think of me. As the meeting progressed and we went around the room, a very curious thing happened: the distance between these perfect strangers began to close. With each share, I looked around and began to see recognition and subsequent relief in the eyes of every person there. That’s when it hit me. We were all in this together, bravely crawling out of behind-the-scenes obscurity and isolation, vulnerable to whom and what we might find in our quest to make sense of a senseless disease.
Having experienced some extremely depressing “patient” support groups in my past, I am extremely humbled and grateful to be a part of the “Emerge from the Cocoon of Lupus” program. Part of the reality of having lupus means interaction with people who just cannot possibly understand how much it changes every aspect of an individual’s established social, personal, professional and internal processes. Without knowledge and empathy, an already frustrating or scary situation escalates and may quickly become overwhelming or life-threatening. The monthly support groups offer a connection to others who may have already experienced another’s current situation, the ability to address real issues in an understanding environment where, for once, there is no explanation necessary. In a forum where every voice may be heard, priceless information is presented through different experiences, ideas and perspectives delivered with tact, respect, humor and understanding. Encouraged by those who return month after month, I am beyond thrilled that resources, hope, innovation and empowerment can be found here.
To view our support group schedule, click here.