A diagnosis of lupus remains with you for the rest of your life. And, as you have read, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself. But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.*
It is extremely important for a person diagnosed with Lupus to be able to not only accept the disease but to also accept that even with Lupus life goes on. We may have periods of remission but aside from that Lupus is not going away. Acceptance comes at different times for all of us. When acceptance comes to you then you can get to that place you can start to live your life. It took 3 years after being diagnosed for me to FULLY accept some of the changes in goals for not just my life but our family life. At 28 years of age, I had to let go of the dream of being able to have more children. This was and honestly still is the hardest part of Lupus for me to accept. It took a while to get here but once I realized that if I spent all my time bemoaning not having a house full of children; I was going to miss out on the child we do have. But no matter what I am a firm believer in not allowing the fact that I have Lupus become a negative in my life. Even in how I say that I have Lupus is important to me. I don't SUFFER from Lupus, I SURVIVE it and I LIVE with it.
Admittedly there are many things I am either physically unable to do or I can't do them safely anymore because of Lupus and the complications I have and/or medications I take. However I refuse to dwell on those things because there is so much more that I can do and will do. I don't waste time or energy on "why me", it isn't a question that will ever be answered to my satisfaction so why ask it. Instead the question I ask is "What can I do to get better?"
Lupus is different for all of us, from mild and on one medication to organ involvement and multiple medicines. My case is not mild, I have Class IV Lupus Nephritis, antiphospholipid syndrome, severe joint pain, and bone damage from steriods and chemotherapy. I am married, a mother, I have a career, friends, and even enemies. I fight everyday to not let Lupus be the only thing that defines me.
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