Thursday, July 9, 2009

So Michael Jackson had Lupus.....

....After all, the King of Pop appeared frequently in public with an umbrella, a mask, a glove, long sleeves and long pants, and often was in a wheelchair.
Not that all lupus patients manifest these symptoms. According to reports, he suffered from the discoid type of lupus, which means it affected his skin. Those with systemic lupus have these same manifestations, and then some. And each lupus patient has his own particular set of symptoms, whether it be joint pain, rashes, kidney involvement, pleurisy, or neurological involvement.
Several of the lupus support groups I frequent have asked why on earth he didn't make his disease known to the public, so he could help publicize this puzzling illness. On the other hand, others in the groups have remarked, in no uncertain terms, "we don't want that weird-o representing us. We have a hard enough time explaining ourselves as it is."
And they may be right. Lupus-induced or not, some of his behavior can best be described as bizarre, and we certainly don't want to have that stigma attached to us as a group. Granted, we experience something called "brain fog" and sometimes our mental capacities can be diminished to the point where we become forgetful or confused, but not all of us have those experiences, either. Some of us have pleural effusion, some have kidney involvement. Some have rashes, some don't.
I never developed the butterfly rash. My presenting symptom was joint pain. I know one woman whose only sign of lupus was that her kidneys quit working. No other warnings, just one day she realized she hadn't urinated in a day or two.
No wonder people are mystified by this disease. Those of us who have it continue to be baffled by strange pains, rashes, mouth ulcers, breathing problems, neurological symptoms, and other off-beat, unusual complaints. Right now, I might be having a small flare, and I don't know how long it will last, or if it will progress to a full-blown, hospital-justified illness of unknown severity. Or it may be that I'm just feeling my age, in the Texas heat, and in general having a bad day.
I'm just glad that I don't have to feel responsible for explaining this disease to the general public. And maybe that's why MJ didn't explain his illness to anyone, either.
It's one of the hardest diseases to diagnose, treat and explain to others, even when we think we know all about it.
Lupus continues to surprise us.

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