A recent survey in the USA shows that, in terms of what lupus has done for my working life, is pretty much what it has done to the majority of lupus patients there a well.
The majority of lupus patients reported that lupus had affected their working life in some way. Many had retired earlier than expected or had their careers cut short in other ways. Lots have had to change careers, and/or reduce their working hours. Many had taken time out sick.
So my having two years out from work, effectively going into very early retirement on health grounds, then working only 30% time, in supply ministry (meaning I can stop at any time if my health fails again), is pretty typical of lupus patients.
That means that all around the world, people who have increased living costs because of the cost of lupus treatment, are living on much reduced incomes.
Lupus affects our health. But it also affects our livelihood, our sense of usefulness or purpose, our families. The big, bad wolf, takes so much away from us. A diagnosis of lupus means that everything we planned to do with our lives has to be re-examined. But it doesn't mean our lives have ended.
Wall Street Journal Market Watch, Study Shows The Burden of Lupus on Work and Wallet