I had the great pleasure of meeting Chandra Russell, a dynamic young woman living with the disease, who took me on a journey as she explained her story. Chandra is a 20 year Lupus Survivor and Advocate and fellow graduate of the University of Miami who took the time to speak with me about her experiences:
What do you think is the biggest misconception about Lupus?
The biggest misconception is that people with lupus exaggerate their symptoms, or are hypochondriacs because "they don't look sick". I think this misconception is mainly due to the fact that many people are uneducated when it comes to lupus. There is a lack of awareness and education when it comes to Lupus, which often causes those living with the disease to be misunderstood and/or mistreated. I encounter many with lupus that have given up because they can't cope with how they are treated. Mistreatment can be in the workplace, within the public health system, with public assistance on the federal and state levels, as well as many other ways.
The most effective is sharing in the stories of those actually living with the disease. I regret not taking the time to sit with my mother to talk to her more about her disease.
I know this was primarily because she did not want the family to worry too much about her and she didn’t want to be a burden, a philosophy many sufferers share.