It’s great to see so many people using this site - a big thank you to LUPUS UK for setting up such a safe way for us all to communicate with each other.
I recently went to see my GP for a routine appointment for a medication review. My usual doctor had been called out on an emergency so I saw another, much younger doctor. He seemed very lupus aware and said his sister was diagnosed with lupus a couple of years ago. We talked about my medication for a while but something didn’t feel right - he was TOO sympathetic. He used words like ‘poor you’ and how horrible it must be to be a ‘victim’ of lupus. Instead of coming across as understanding, he seemed almost patronising and I began to long for my usual doctor who openly admits he doesn’t know much about lupus, but is always willing to learn (mainly from me!!!)
When I got home I thought about what he said about being a ‘victim’. A victim of what? Lupus patients are not victims - we are courageous people living with a highly challenging illness. I’ve never seen myself as a victim - lupus can affect anyone, I wasn’t singled out.
It’s strange how just a word can make you think about how others see you. I think ‘lupus survivor’ describes us much better than ‘lupus victim’.