The nurse pierced me with her tired eyes. “Sit” she whispered with such intensity that her veins popped on her forehead and her lips quivered. I sat on the toilet seat as she watched me closely. It must have been two o’clock in the morning and she was exhausted. Emotionally drained by my constant need for assistance.
Lupus can strip you of your dignity and pride. At a stage, I was so ill that I was sent to the Palliative Care Unit in the Eastern Cape – a place where the terminally ill were sent to ‘die in dignity’. It was that serious. The staff were incredibly kind to me. I had my own sunny room and they allowed unlimited visitors; served great food; and even added a bed for my Mama to sleep next to me particularly on the difficult days. There was always singing and a comforting ethos of care and compassion. This, even in the midst of patients who were literally dying daily. Hearing other patients screaming in agony and seeing brown coffins in the mornings became commonplace.
I could hardly do anything on my own and relied on Mama and the nursing staff to feed me, cloth me, wash me, and yes, change my nappies.
Us lupus warriors cannot expect people to fully understand what we go through, and very often people do not know how to react or respond to our pain. Never underestimate the power of compassion. My loved ones and the nursing staff at the Palliative Care Unit ushered me out of that dire situation and their compassion and care had A LOT to do with it. You don’t have to understand but you have the capacity to love your lupus loved one. Be willing to feed them, clothe them, wash them, pick them up, listen to them when they are at their most vulnerable and weakest. When they feel humiliated because they cannot perform normal daily tasks. Being willing to wipe their bums, so to say. This WILL play an enormous role in their recovery process and in restoring their self-respect. #CompassionForYourLupieLovedOne