Lupus may be part of my story, but it will never be the author of it. I define my lupus, not the other way around.”
If there is one thing I want every lupus warrior to know, it is this: you are so much more than your diagnosis.
My lupus journey began in 2016, when I was in matric. At the time, I didn’t understand why my body was changing. I was fainting, struggling with shortness of breath, experiencing headaches, overwhelming fatigue, joint pain and stiffness, mouth ulcers, hair loss and the butterfly rash across my face. I had lived with Raynaud’s phenomenon for years without knowing what it meant.
In 2017, everything became worse. I was in constant pain, exhausted and frightened. Eventually, I was admitted to hospital. After countless tests, I finally heard the words that would change my life: systemic lupus.
I remember feeling scared and confused. I had never even heard of lupus. Suddenly, the future I had imagined felt uncertain.
Before lupus, I was studying hairdressing at Images One in Newton Park. I had dreams and plans for my life. But my health deteriorated, and hospital admissions, treatments and appointments became my reality. Eventually, I had to leave my studies. It felt like lupus had stolen a part of my future.
My treatment journey has been difficult, including azathioprine, cyclophosphamide, methotrexate, MMF and, since 2019, rituximab. I have faced seizures, neutropenia, neuropsychiatric lupus, joint and skin involvement, anaemia, DVT, pulmonary embolism and antiphospholipid syndrome. I continue to take warfarin.
Then, in 2021, COVID-19 pneumonia left me critically ill in ICU and on a ventilator. I honestly didn’t know what the outcome would be. But I made it through.
And somehow, after everything, I found the courage to begin again.
In 2024, I started studying Education at UNISA. Today, I am in my second year of my B.Ed. in Foundation Phase. I am also engaged, building a future filled with love, dreams and hope.
Lupus has taken things from me, but it has also taught me resilience. It has taught me that resting is not weakness, starting again is not failure, and surviving difficult days is an achievement.
To every lupus warrior: please remember that your diagnosis is only one chapter of your story.
I have lupus, but lupus does not have me.
I don’t let lupus define me. I define how I live with lupus. My story is still being written