NancyK
Diagnosed at 45

What do you want others to know about lupus?

More often than not, those of us with lupus usually look "healthy". It is quite common for others to forget/dismiss the limitations that accompany a lupus diagnosis. I have no doubt that many are skeptical about this mostly invisible disease, suspecting exageration at best, and malingering at worst.

Why is lupus a cruel mystery to you?

I have had to adjust my daily activities to reivent a life that is quite different from the one I had before being diagnosed. On my good days, forcing myself not to overdo things is hard, but if I do, I know that I'll have hell to pay later! Accepting a diagnosis of lupus does not occur overnite, and I have had my share of anger and sadness in the process. I could sell you a story about how it has led me to a more enlightened existence etc, but the truth is I would tade all of these personal insights in a heartbeat to return to a life devoid of lupus.

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