I’m now 24 years into my journey with Systemic Lupus Erythematosus (SLE).
It began when I was just 18 — with rashes across my face in that well-known butterfly shape. At that time, I didn’t know what it was. I only knew that something inside me had changed. I was young, confused, and deeply self-conscious, so I stopped going out except for what was necessary — university, exams, the basics of life. That quiet isolation lasted for almost two years.
Eventually, I found an American medical center where a wonderful doctor finally suspected lupus. She explained everything carefully but didn’t give the official diagnosis. She prescribed medications that helped for a while, but when I stopped, the symptoms came back stronger.
Between the ages of 20 and 32, I tried to live what people call a “normal life.” I got married, graduated from university, became a mother, and started working — all while lupus quietly lived in the background. It was untreated, unpredictable, and painful. Every day brought fatigue, swelling, and inflammation. My veins were inflamed due to vasculitis, my eyes and joints swollen, and my weight dropped drastically.
Then, when I was 32, everything collapsed. My body was so swollen I couldn’t move. I called an ambulance — that moment marked the beginning of my path towards remission. I was finally diagnosed officially and given proper treatment.
Two years later, I discovered yoga, and it completely changed my relationship with my disease. It taught me to listen to my body, not to fight it. Since then, I’ve learned, read, and practiced acceptance — slowly building peace with lupus instead of resistance.
A year ago, after 11 years of hormone treatment that damaged my stomach, I decided to experiment. I stopped the medication. Unfortunately, my condition worsened again, and I had to return to treatment. It was a hard decision, but I’ve learned to accept that this is my reality.
Behind the scenes, I still work every day — managing analytics – how did I feel yesterday? where was the pain located? how did it feel? was it something new or known? fatigue, and fear of the unknown while trying to live a joyful life. Lupus is invisible. Nobody sees how my own cells attack my body, or how deeply it affects my organs and energy. That invisibility is perhaps the hardest part — people often don’t understand what they cannot see.
But through all these years, I’ve discovered three essential lessons that have personally helped me:
- No stress. It’s easy to say, but it takes years of learning. You have to teach yourself calmness.
- No control. Surrender and embrace. It doesn’t mean giving up — it means learning how to live better with a chronic illness, not against it.
- Love yourself and believe in tomorrow. Mindset changes everything. When you start appreciating, your world shifts.
Lupus has taught me to live gently towards myself — because every day truly matters. I appreciate my family support, it’s hard to live with a chronic illness, but it’s way harder to live beside me, I know. That’s why my husband’s and my daughter’s time; care and attention are invaluable!
Article by Alexandra
