This comment really blew me away and summed up how important an article like this is for such an unknown disease:
Last night at my husband’s office party, his co-worker gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked. “I’m great I replied.” “No. Really. How are you feeeeeling?,” she asked.
When you are young and living with incurable cancer, everyone thinks they have a perfect understanding of your disease, expects you to feel like crap, and thinks you are a heroic trooper when you don’t.
I find this whole charade is maddening. But, after listening to the voices of lupus, I recognize that I am lucky to have a disease with good name recognition that others take seriously. Prior to my cancer diagnosis, my doctors suspected lupus. I now see what a very different social experience I would be having were that my diagnosis.
— Kairol Rosenthal