The agony of living with Lupus disease

June 2, 2022

Have you ever woken up with pain all over your body? That was my situation five years ago, on this memorable day I woke up and I could neither open my eyes nor lift my head, hands, or legs, the pain was so numbing it felt like my body was on fire! I was experiencing unexplainable pain, the kind of pain that draws a straight line from head to toe.

My trip to the hospital led to emergency admission. The blood tests showed a severe infection, and I was put on medication, this brought about some relief. However, the battle was not yet over. A week later, the pain was back, this time I was experiencing headaches, stomach discomfort, joint pains, backache, fatigue and painful fingers and toes.

Pain became the order of the day and my health became unpredictable, often, I returned from the hospital with a “nothing was found” report. The African instinct would point at witchcraft! How can one be so sick, yet with no diagnosable ailment? This left me in so much confusion and mental agony.

My diagnosis in March 2018 after almost five years with lupus was the beginning of an end to unknown pain and a transition to many unpredictable and challenging days. It was an overwhelming shift of my once active and healthy life.

After a series of hospital visits and being treated for numerous diseases from nerve disorders, enlarged ovaries and pneumonia to magnesium deficiency, I experienced the rash. The facial rash is the most distinctive sign of lupus. It resembles the wings of a butterfly unfolding across both cheeks. That was my landmark! Everything changed, and my life went through a metamorphosis. Like a butterfly, I began to experience life in a way that I never imagined.

I had to adjust my lifestyle. I could not stay in direct sunlight for long hours, I had to watch my diet lest I get a flare up. I also had to be mindful about my social interactions, especially being in crowds since I was easily predisposed to infections. In retrospect, I realize that the disease may have found its way into my system a while back. I recall having occasional joint pains, strange fatigue, coldness, and numbness of the fingers and toes- I always had gloves and socks in my handbag. I had been treated for bacterial infections that my body became antibiotic resistant.

 Many people I tell about Lupus hear it for the first time from me, just a few have some knowledge about it. Lupus is a systemic autoimmune disease that arises when the body’s immune system attacks the tissues and organs. It can cause permanent damage that ultimately endangers the function of some organs and systems in the body like the joints, skin, kidneys, lungs, brain, central nervous system, blood cells, and the heart. Its diagnosis can take years as the signs and symptoms mimic other ailments. Many people suffer years of pain and misdiagnoses when a proper diagnosis would make their lives better. Living with a rare yet chronic illness can be frustrating because of the challenges that arise from misdiagnosis, misconceptions, lack of awareness, and the life-altering effects that come with it. With the COVID-19 situation for people living with the disease, it is a daily fight between staying safe and managing the disease. Any infection can lead to a flare-up.

Despite the lack of a cure, people can live with lupus. I have embraced my diagnosis, I keep my appointments, take my medication as prescribed, eat well, and avoid anything that can trigger a flare. Every day is a new experience as I continue learning how to live better with this invisible and chronic illness. The journey is not enjoyable, but I keep holding my head high because I am a butterfly warrior and cannot despair.

May is lupus awareness month. We share about lupus on social media, and wear purple as we celebrate Lupus warriors.