Lupus Ontario Working together to conquer lupus

Personal Stories

So that you may have hope for your future, I offer my story of living with Lupus. This was first published in HEALTH SHARING MY STORY, OUR STORY in 1991, and updated in 2002. Taming the Wolf:Learning to Live with Lupus by Anne Matheson Lupus Erythematosus means 'red wolf' in Latin. A French dermatologist gave this name to patients who had a rash on the bridge of the nose and across the cheeks in a mask-like shape, like that on the face of a wolf. I am one of the 50,000 Canadians known to have lupus erythematosus, an immune system disorder that causes the body to attack itself. It can hit like a ton of bricks, or it can simmer for a long time, whittling away its victim's joy of living. Although it is more prevalent than muscular dystrophy, multiple sclerosis, and leukemia, many doctors still know little about it. They often refer to lupus as 'the great imposter' because its symptoms mimic other diseases and make it difficult to diagnose. It may begin with vague symptoms that come and go - fever, rash, loss of weight, loss of hair, sensitivity to cold and sunlight, fatigue, or joint aches - or it may start with major system involvement. No one knows why lupus affects women, nine times more often than men, or why it occurs most frequently between the ages of 20 and 40. I first got lupus when I was nine years old when The Mickey Mouse Club, crinolines and bobby socks were in vogue, and lupus was considered a rare and fatal disease of the blood. Children who got it usually died. This is my personal story of my ongoing battle with this disease that has so far spanned four decades. My younger sister, Lynn, and I often were taken for twins since we were the same size although we were a year apart in age, and my mother dressed us alike. During our bi-yearly health checkups, our pediatrician would sit us together on the examining table and stand us side-by-side in the x-ray machine. Eventually he got us confused. He treated me for Lynn's sinus condition, and her for my kidney problem - a mistake which nearly cost me my life. My kidneys became unable to filter body wastes and fluids. This made me so bloated and drowsy - it was like being slowly poisoned - that I barely could drag myself to school. One day, I put my head down on my desk and drifted into a deep sleep. The next thing I knew, my teacher who was calling me 'lazy' was awakening me. Although I was hurt by his remark, in retrospect, this incident may have been a blessing in disguise. It led to my mother questioning me a lunchtime when she saw my eyes were puffy from crying. Later that night my parents discussed their fear that there was something very wrong with me. They had noticed a drastic change in me; I was no longer the energetic child they were used to. I had put on a lot of weight quickly, and my feet were so swollen that I could not get my shoes on. Although I was seeing our family doctor regularly, I was not getting any better, so my parents followed their instincts and found another doctor for me. Dr. White was a pathologist, nearing 70-years-of-age, who came highly recommended. He seemed to know immediately what was wrong. He pressed a deep indentation in the putty-like skin of my leg, shook a knowing head, and left the room. Within minutes he was back with a colleague of his, a nephrologist, a specialist in kidney disorders. A couple of hours later the results of urine and blood tests confirmed their suspicion that I had nephritis, inflammation of the kidneys. It had caused all my vital organs to become like sponges soaking up bodily fluids. Lupus was not considered at the underlying cause of my kidney trouble at that time. My mother told me many years later that Dr. White had held very little hope for my survival. He said that "nature will take its course." My parents felt helpless because there was no cure for nephritis, and instead of medication I was given a diet of nothing but par-boiled rice. It was supposed to absorb the excess fluid in my body, and sure enough when I was discharged from hospital three weeks later, I was thirty pounds lighter. Because I felt well, I was surprised at my doctor's prescription, which was an entire year of bed rest. I had just turned 10, and as a mother now myself, I understand that persuading me to stay in bed was a monumental task for my parents. A year passed and my doctor finally gave in to my pleas to go outside. Continued Top Home