Her Lupus Journey
Lupus is often called the invisible disease. Here, three women share their personal battles and triumphs, shedding light on the daily reality of living with the condition.
Hazura's Story
"At the time, I started noticing that playing outdoor sports or eating certain food would often lead to a rash. With Malaysia being so hot, doctors attributed my symptoms to the heat and allergies and prescribed antihistamines. As the joint pain started, and no one could tell for sure what this mystery illness was, I was prescribed medication for rheumatoid arthritis.
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While at university in London, studying Chemical Engineering, my symptoms got progressively worse. With crippling joint pain, walking to classes was sometimes impossible. After many doctors’ visits I was finally diagnosed with lupus at the age of 19. For the first time I was given a name for my disease."
Lori Carter's Story
"When my doctor called me at home and said I had SLE, I didn’t really know what to think. I was kind of relieved but I had no idea what I was in for…and then the treatments started.
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The first three years were miserable. When your kidneys are failing they put you on the same regimen as a kidney transplant patient, so a lot of the side effects from the drugs were more difficult than any symptoms I had from lupus. One of the side effects the medication can have is that your hips can collapse, and of course mine did, so I had to have a double hip replacement.
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It got better, but it was the most difficult time of my life in terms of health. I’m just now starting to feel like I look like myself, feel like myself, but I had to go through it all to get to this side."
L'Mekka's Story
"I was diagnosed in 2008, and since then, my life has been a constant fight between faith and fatigue, strength and surrender. In 2018, lupus attacked my kidneys. By 2021, I started dialysis.
Every Monday, Wednesday, and Friday, I sit for hours while a machine does what my body can’t. Some days I leave weak, lightheaded, or in pain. I’ve passed out more times than I can count. I’ve fallen, hit my head, and bruised my knees, but I keep getting back up.
This journey has taught me what real strength looks like. It’s not loud or glamorous, it’s quiet, persistent, and full of grace."
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Dorina's Story
"My name is Rina, and my lupus journey began when I was 16.
It was right before summer 2015, and at first, I thought I had overdone it at soccer practice. I assumed the pain was soreness. But this pain was different. It became unbearable, and I could barely move. My body felt like it was turning against me, and I could not understand how life changed. After tests, I found out I was anemic and had rheumatoid arthritis. Still, my doctor believed something bigger was happening. By my third visit, she diagnosed me with systemic lupus erythematosus, also known as SLE. Hearing that at 16 was terrifying. I did not understand lupus or how much it would take."
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