What do you want others to know about lupus?
Don't keep saying "you look great" because the worse I feel the harder I try not to let it show. I am in an advanced state, so things are rather bad most days. And please! - medical professionals - pay attention to your patients and connect the dots. I say this because I have complained for MANY years about this or that, only to be treated for this or that. SAD!
Why is lupus a cruel mystery to you?
EVERY WAY! I have always been an active and very alive person. At this point I am rather just a person. Everyday tasks require extreme effort. I am barely able to have a life, and when I try to - it is cut short because I can't keep up. And there is added the deep frustration and depression of not being able to do almost anything. Then there is the ever present pain, which wears me down even more. I don't like thinking that so many are also having to deal with this. So - I guess I could say I really don't have a life. I am still alive - but not able to have a life. It is a sad commentary that this "advanced" age of health care and technology cares so very little - or none at all- about this disease. Lupus is not an issue with the powers that be. Let one of them have it and then maybe something will be done. I honestly hope so.
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