I was diagnosed with Lupus (SLE) in December 2023, after being admitted to hospital with severe swelling and painful scarring on my hands, feet, and legs. In the weeks leading up to that, I had experienced pain and swelling in my ankles but kept brushing it off. Then one day, I left work struggling to walk and noticed my entire leg had swollen to nearly twice its normal size. My skin was sore, blistering, and covered in lesions. My family took me to hospital, where I was admitted for testing and observation.
Doctors quickly identified inflammation and damage to some of my organs, including my kidneys and liver. I stayed in hospital for two weeks undergoing tests and eventually received a diagnosis of Lupus (SLE). Looking back, I know how lucky I was — the consultant on call happened to be a lupus specialist and recognised the symptoms immediately.
Nearly two years on, my lupus is still very active, I’ve undergone several treatments and am learning to manage it and still live my normal life. One of the most difficult things about this condition is how unpredictable it is — the way it affects my body constantly changes and seemingly without reason. That means a lot of appointments, tests, and adapting. Lupus is often called “the illness of a thousand masks”, and I’ve come to understand why. Over time, it’s affected various systems of my body; organs, skin, weight, hair and vision.
Being diagnosed with a chronic illness like lupus is overwhelming. It hits you extremely and unpredictably. I used to be athletic, fit, and never got sick. I even had COVID the year before and didn’t feel more than a sore throat. To go from that to then having to worry about infections, blood clots, joint issues — it’s surreal. With the support of my doctors, family and friends I have been managing my lupus well and learning the importance of balance, self-care, and appreciating and enjoying life
If I could offer any advice to someone newly diagnosed, it would be this:
- Listen to your doctors and stick to your appointments — they matter.
- Speak about it. I’m not someone who finds it easy to open up. It’s taken me nearly two years to even begin processing the extent to which it can affect people, and to finally tell some of my closest friends, up until this year, most of them had no idea I was even ill. It’s much harder pretending you’re okay than it is to be open and admit you need help.
- Allow yourself to rest, the illness and treatments can be exhausting and it’s okay to need a break.
- Prioritise your peace and happiness, as anyone with lupus knows it’s linked to stress. Most importantly, prioritise your health… Health is wealth!
Article by Sarena