I never imagined a simple rash on my face would mark the beginning of a long, exhausting health journey. Unfortunately for me, that rash was only the start of my battle with lupus.
Back in early 2022, I returned home from a holiday in Zimbabwe with a strange rash across my cheeks. I assumed it was just a reaction to the heat or a flare-up of my eczema. After trying several creams and switching up my skincare routine, my skin improved slightly but new symptoms began to appear. I was constantly tired. A full day at the office would leave me so drained that I’d need two full days to recover. I lost my appetite completely, sometimes going more than 24 hours without eating, and when I did manage to eat, I often vomited soon after.
I visited my GP so many times that I was on a first-name basis with most of the nurses at my local surgery. At first, I was told I was fine and just adjusting to a new job and routine. When the symptoms worsened, I was told I was anaemic and prescribed iron tablets—but nothing changed.
This back-and-forth continued for over a year. Each appointment felt like a dead end. Meanwhile, my friends and family could see I was wasting away. In the 18 months I’d been suffering, I lost almost half my body weight and weighed just over 50 kilos. My mum resorted to giving me calorie-rich milkshakes meant for people unable to eat solid food.
One fateful day, a friend mentioned my symptoms to another friend who is a medic. He suggested a list of specific tests to rule out lupus (SLE) and coeliac disease. I took the list to my GP, but was told it wasn’t likely to be either. It wasn’t until one of my favourite nurses saw how desperate I was after I broke down in tears that she agreed to run the tests.
Four days later, I received a letter from the hospital with a referral to the rheumatology clinic. My appointment was the very next day. On the 26th of September, I finally got my diagnosis: systemic lupus erythematosus (SLE).
The feeling of relief was indescribable. After almost two years of confusion, fear, and frustration, I finally had a name for what was happening to me and a plan for how to fight it. Getting the diagnosis was a huge step forward, but it was only the beginning of finding a new kind of “normal.”
Since then, I’ve tried different treatments and learned how to manage my symptoms as best as I can. Some days are good, others are overwhelming. I used to be a very active individual but somethings I used to be able to do – I can’t anymore. I’ve had to accept that rest isn’t laziness, it’s essential. I’ve learned to listen to my body, to be kind to myself when I can’t do everything I used and to celebrate every small victory like getting through a full workday or a concert with my friends without pain or fatigue.
Living with lupus isn’t easy. It’s unpredictable, invisible and often misunderstood. But it’s also shown me the strength that comes from perseverance & the importance of advocating for myself. The support that I’ve had from my friends and family has been one of the greatest gifts, without them I truly don’t believe I would be where I am today.
While I wouldn’t wish this experience on anyone, lupus taught me a powerful lesson: even on my weakest days, I am stronger than I ever imagined.
By Steph