What do you want others to know about lupus?
Living with lupus is a daily and sometimes hourly challenge. Living with a disability like lupus means that most people have no idea what I am contending with, often express disbelief that I am ill. Lupus is real and it can be devastating. Even when I do not look ill I am still contending with this disease. Lupus is real but it doesn't define me.
Why is lupus a cruel mystery to you?
Every day I am aware of the challenges that Lupus brings to my life. Every day I work to meet those challenges and to live healthfully. I cannot engage in all of the activities of my peers because my Lupus is an impediment but I will not let it defeat me. At times I walk with a cane and then three days later I don't. This is not a ploy for sympathy it is a reality of my disease. Each day I do not know what form my disease will take: it may be a flare with a rash and a fever; it may be joints that are so stiff i cannot walk without a cane; it may be a day where I am unable to focus on even the simplest tasks OR IT MAY BE THAT RARE SPATE OF DAYS WHEN I ACTUALLY FEEL FINE. This is the reality of Lupus. I refuse to allow it to defeat me but I now refuse to deny that it is present in my life. My Lupus is real but it does not define me and it will not defeat me.
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