‘I have this shadow over me’: lupus patients share their experiences living with the disease

From debilitating symptoms to ‘medical misogyny’, patients describe an uphill battle, despite improving treatmentsBlack patients in England more likely to be hospitalised with lupusWhen Juliet Saffrey from London was diagnosed with lupus she was in the prime of her life, aged 24. “When I received my diagnosis in 2000 … up until that point I felt invincible,” Saffrey, now 49, says. “ I was travelling two or three times a year, I had bought a new car. I was just having the time of my life in my early 20s.”Saffrey’s diagnosis came after she experienced symptoms such as extreme fatigue, to the point where she was falling asleep at work, as well as joint pains, headaches, and mouth ulcers. But fortunately, her GP immediately suspected lupus when Saffrey presented those symptoms and she received her diagnosis relatively quickly. “Having been diagnosed, I remember thinking: how is this going to change my life? I was in shock, thinking one minute I’m invisible and the next minute I’m not. I now have this illness, this shadow over me.” Continue reading...