Because of the inflexibility, because it's often invisible, others can't see muscle and joint pain, fatigue sometimes others can't see. It's difficult to describe to employers, family members, co-workers, friends that it's so very helpful to meet with others who share and understand what living with lupus is like everyday. A person in a support group knows exactly what that feeling's like. It's a nice place to get in a non-threatening environment, the emotional and psychological support. Not to mention, to learn about other resources and what works for other people.
Support groups tend to have a negative connotation.
We always try to emphasize the positive, point out what people CAN do and not what they CAN'T do. We help one another out. For example, if someone is having surgery, we try to bring in meals, help them with transportation, it's a real camaraderie among the members. We can do a fair amount of laughing in our group. And, they tend to be positive and upbeat.