Funny story (sort of.) For 23 years, since I was diagnosed with SLE, I have essentially served as the poster girl for people who know, or have known, someone with Lupus. I don’t mention my illness often, but when I do, there are a small repertoire of comments I have come to expect:
“Someone I work with has Lupus.”
“There’s someone in my building with Lupus.”
“A woman at my church has Lupus.”
“I’ve been tested for Lupus.”
And the winner is:
“Oh, I know someone who died from Lupus!” This charming remark came just weeks after my diagnosis.
In social situations, I have frequently been introduced as “Ellen, the one with the Lupus.” “THELUPUS” is clearly one word. I recognize the look of discomfort in their faces as Lupus is mentioned. Everyone has heard of it. People generally recognize it as something serious, but they don”t know much about it. Heck, even I’m uncomfortable with the mention of Lupus. It’s a complicated thing to understand. Aside from the medical definition, how would I begin to describe how my life has been affected by this complex condition?
Medical professionals also have interesting reactions to SLE. Doctors who can’t be bothered to remember my name, usually point at me and utter “SLE” or “Lupus.” Yup, I’m the Lupus girl! My name – irrelevant! Even the pros are frequently baffled by the complexity of the symptoms, pain and nuances that come with this condition. This has been a tremendous source of frustration for me. Where do you go when the doctors don’t know what to do for you?
I have lived with Lupus for nearly a quarter of a centuty. I try not to define myself by this illness; it is something I have, not who I am. Sometimes it is difficult to separate the two.