MaryPhila
Diagnosed at 40

What do you want others to know about lupus?

Lupus is not as nice as having cancer which you can cure or it kills you fast,6-18mo. Lupus just declines the quality of your life continuously dragging it out over 20-30 years; all while people dont believe you & call you a liar when you don't feel well or cant do something. Like my Insur.said when they declined a med,"You're not really sick unless u hav cancer"

Why is lupus a cruel mystery to you?

It has destroyed my life. Made another disease come on 25 years prematurely which then keeps MY Lupus Active. (Not just a flare). I'm too young for a nursing home, not married, have NO kids, and my parents are crippled in a nursing home an hour away. I cant work, have no money to put a roof over my head, eat & get to drs and meds. I cant do for myself anymore, I am literally hunting for just the right street corner to move to. Luckily there are a lot here in a big city.

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