Updated: Nov 8, 2020
Do not think for a second that your children do not know that forced look. "I'm fine," that you repeat over and over. They know it is not true. You can not mask what is happening or pretend it is all fine. Regardless if you have come to terms with the Lupus diagnosis. The pain, depilating exhaustion, and depression will come in waves. Everyone and anyone that is around you knows that you are not ok. My oldest daughter, was in middles school once my lupus diagnosis was known. Everything happened at once it seems, the illnesses, the medical retirement, disability. Moving. My daughter saw me on the phone. Making appointments with various doctors, leaving messages for physicians schedule occupancy. Sleeping, yelling, yelling, crying, sleeping and more crying. My time was being recorded by my middle school impressionable daughter. She began having panic attacks. She started to develop a perfectionist attitude. Everything had to be on a schedule. It was difficult to just be spontaneous or change plans somehow. My beautiful confident growing girl was becoming a mess and my illness was at the root of it. As any Lupies can confirm, this illness affects your entire family. We decided to attend family therapy and then she enrolled in private sessions. It helped tremendously because she learned skills that would assist her in social circumstances. Then it happened...she was committed to swim at a private university. She earned an academic scholarship and an athletic recruitment. After we paid her nonrefundable deposit she said it...I don't want to go away to college. After weeks of stress, flare ups and what just happened? She said it, "If I leave I am worried that you will die." There it is! The insecurity, the shame because I thought we played happy enough. I thought my grinning through the pain was enough. I was not fooling anyone except myself. I was shielding her from my personal pain. I did not want her to worry. I did not want her to feel alone. Let them see. Let them be a part of your process and pain. Show your fear but also show your courage. My little ones are so aware and unafraid. Be true, real and honest. Everyone already knows. Cece went to college and she is thriving. I now tell her, I am having a moment." Does not make me weak just honest.