I am 37 years old and I have lupus. I have been living with this invisible, chronic, life-threatening, autoimmune disease for about 4 years. What has originally been diagnosed as “mild” lupus has since blown up into such a monster that it has successfully attacked every part of my body, inside and out, only sparing my kidney and my life. I have gone through more pain and suffering than I could have imagined for myself or for anyone I know. Until this point, the worst physical pain I experienced was being in bed with a flu. The lowest depth of misery was studying for the NY Bar exam. All of my experiences thus far paled in comparison to what lupus had in store for me. The scariest part of this disease is that, neither I nor my doctor could be certain that the worst is over, or that it might not happen again or that the next flare might not be worse. I shudder at the thought of possibly experiencing the worst parts of this disease again. Like a victim of a violent crime, I fear any repeat offenses by the disease. Unfortunately, the choice of not experiencing it all over again is not really up to me.
Than, what to do?
Because this is an incurable disease, I only have two choices; either learn to live with the disease or well, not live. At the highest points of my pain, the latter seemed very appealing. Even so, I do not think I am ready to throw in the towel just yet.
I learned that the five stages of grief are denial, anger, bargaining, depression and acceptance. I do mourn over the death of “me” and all that I was, and all that I could have been had I not been saddled with this new identity. I am hoping, however, that I have started on the road to acceptance. After all, I am now a Lupie and as much as I wish it was not the case, I have to learn to live as one.